) use of language
TRANSCRIPT
Providing research and information services to the Northern Ireland Assembly
Research and Information Service Briefing Paper
1
28th May 2020 NIAR 132-2020
Dr Janice Thompson
Autism (i) Programmes of Care and
(ii) Use of Language
Contents
1 Context 2
2 Programmes of Care 2
21 Current Programmes of Care in the HSC in NI 2
22 Potential for a New PoC in NI 3
3 Autism and Use of Language 5
31 Introduction 5
32 Language used in Diagnosis of Autism 6
321 Profiles 6
322 International Classification of Diseases (ICD-11) 7
33 Language used to Describe Autism 8
331 Key Research Study 8
332 NHS England Learning Disability and Autism Advisory Group (2017) 9
334 Getting the Language Right about Autism 11
Paper No 3620
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 2
1 Context
This briefing paper has been prepared to support the development of a potential
Private Memberrsquos Bill concerning Autism The paper focuses on two separate topics (i)
Programmes of Care within the NI Health and Social Care (HSC) System (current and
the potential for a new one specific to lsquosocial and communication disabilitiesrsquo) and (ii)
an introduction to the best practice around the use of language in the UK for the
diagnosis of autism and to describe autism
2 Programmes of Care
21 Current Programmes of Care in the HSC in NI
Programmes of Care within the Northern Ireland (NI) HSC are divisions of healthcare
into which activity and finance data are assigned to provide a common management
framework They are used to plan and monitor the health service by allowing
performance to be measured targets set and services managed on a comparative
basis1 In total there are nine Programmes of Care (PoC)2
PoC1 ndash Acute Services
PoC2 ndash Maternity and Child Health
PoC3 ndash Family and Child Care
PoC4 ndash Elderly Care
PoC5 ndash Mental Health
PoC6 ndash Learning Disability
PoC7 ndash Physical and Sensory Disability
PoC8 ndash Health Promotion amp Disease Prevention
PoC9 ndash Primary Health and Adult Community
The Northern Ireland Capitation Formula is used by the Health and Social Care Board
(HSCB) to determine the lsquotarget fair sharesrsquo of the available resources for hospital and
community services which should be used to serve the population of each Local
Commissioning Group (LCG) These services are then commissioned from the Health
1 Hospital Activity Outpatient Statistics Statistics 201819 Department of Health Information Analysis Directorate Appendix 5
Appendix 5 Hospital Specialties by Programme of Care httpswwwhealth-nigovuksitesdefaultfilespublicationshealthhs-
outpatient-stats-18-19pdf 2 Factsheet ndash Northern Ireland Capitation Formula Department of Health NI (July 2014) httpswwwhealth-
nigovukpublicationscapitation-formula-factsheet
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 3
and Social Care Trusts (HSCT) by the HSCB The current capitation formula is based
on the Programme of Care (PoC) approach
Each PoC listed above has its own formula to determine it shares of resources
however PoCs 1 and 2 each have two formulae to determine how their shares should
be allocated Each of the PoC formula comprises of three elements the Relevant
Population the AgeGender Weightings and the Additional Needs Weighting3
It is likely that presently funding for services for Autism fall under at least three PoC -
PoC 5 PoC 6 and PoC 7 The Member is proposing that this may not be suitable and
that a new separate PoC be considered for Social and Communication Disability
22 Potential for a New PoC in NI
In terms of understanding the origins of the current PoC and the potential to instigate a
new PoC RaISe posed a number of questions via email to the Department of Health
as follows
When and how were the current nine PoC established
Are the PoC set out in legislation anywhere or are they an administrative
construct and
If there were to be a new PoC ndash what would the process be for its
establishment
The response from the DoH can be found in follow-up RaISe briefing NIAR-208-2020
As stated above the HSCB in NI commissions services from the HSC Trusts and the
current capitation formula for allocation of resources is based on the Programme of
Care (PoC) approach The following paragraphs take a brief look at the commissioning
systems in England Scotland and Wales
For England NHS England and its partners set the overall commissioning strategy
and clinical priorities for the NHS NHS England commissions primary medical
services (for GPs this is mostly devolved to Clinical Commissioning Groups (CCGs)
lsquospecialisedrsquo services (such as treatments for rare conditions and secure mental health
care) military and veteran health services health care in prisons and also some public
health services4
The lsquospecialisedrsquo services are grouped into six National Programmes of Care
(NPoC) Each has an NPoC Board which coordinates and prioritises work across the
3 Factsheet ndash Northern Ireland Capitation Formula Department of Health NI (July 2014) httpswwwhealth-
nigovukpublicationscapitation-formula-factsheet 4 NHS Commissioning httpswwwenglandnhsukcommissioningwho-commissions-nhs-servicesnhs-england
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 4
services in that programme of care The six NPoCrsquos are ndash Internal Medicine Cancer
Mental Health Trauma Women and Children and Blood and Infection5
The CCGs are groups of general practices (GPs) in each area to commission services
for their patients and population CCGs commission most secondary care services
and play a part in the commissioning of GP services CCGs commission planned
hospital care rehabilitative care urgent and emergency care community health
services learning disability andor autism services and mental health services6
In Scotland the Scottish Government sets national objectives and priorities for the
NHS and signs delivery plans with each NHS Board and Special NHS Board There are
14 NHS Boards and seven national or lsquospecialrsquo NHS Boards providing national
services NHS Boards in Scotland are all-purpose organisations they plan
commission and deliver hospital and community NHS services At local level there are
committees of the NHS Boards called community health partnerships or community
health and social care partnerships NHS Boards work together regionally and
nationally to plan and commission specialist services such as heart and lung surgery
and neurosurgery7
The Scottish Resource Allocation Formula is used in the allocation of around 70 of
the total NHS Budget between the 14 NHS Boards in Scotland The Formula
calculates target shares (percentages) for each NHS Board based on a weighted
capitation approach that starts with the number of people resident in each NHS Board
area The formula then makes adjustments for the agesex profile of the NHS Board
population additional needs based on morbidity and life circumstances (including
deprivation) and the excess costs of providing services in different geographical
areas89
In Wales health services are managed and delivered by seven local health boards
(LHBs) These Boards are both commissioners and providers of services in their areas
with responsibility for the health of their local population This means that they deliver
or commission the full range of health services Unlike the other six the Powys Health
Board commissions many of its hospital services from across the border in England
and is much less involved in directly providing secondary hospital care10
A RaISe initial literature research revealed little reference to the use of PoC outside
of the NI HSC (apart from NHS Englandrsquos NPoC) To gain more certainty about the
5 National Programmes of Care and Clinical Reference Groups NHS England httpswwwenglandnhsukcommissioningspec-servicesnpc-crg 6 NHS England CCGs httpswwwenglandnhsukcommissioningwho-commissions-nhs-servicesccgs 7 NHS Scotland How it Works httpwwwournhsscotlandcomour-nhsnhsscotland-how-it-works 8 The final shares actually allocated to the Boards are different from the target shares calculated by the formula The policy of
the Scottish Government Health Directorate is to phase in the Formula by way of differential growth whereby all Boards would continue to enjoy real-terms growth in their allocations year-on-year with those above parity (ie above their formula target share) receiving less growth than those below parity until the new distribution was achieved
9 Resource Allocation Formula Public Health Scotland httpswwwisdscotlandorgHealth-TopicsFinanceResource-Allocation-Formula
10 Worthington Dr P (2019) Is healthcare in Wales really that different Wales Centre for Public Policy 21st October 2019 httpswwwwcpporgukcommentaryis-healthcare-in-wales-really-that-different
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 5
use or otherwise of PoC in neighbouring jurisdictions (to assign resources or manage
services) RaISe then posed a number of questions via email to NHS England NHS
Scotland NHS Wales and also to the HSE in the Republic of Ireland as follows and
referring to the PoC in NI
Is there a similar system in use within NHS EnglandScotlandWales or in the
HSE
If not what is the system used to assign finance to areas of healthcare
If there are such PoC in use ndash in which one does Autism Services sit or belong
The responses from the DoH can be found in follow-up RaISe update briefing NIAR-
208-2020
3 Autism and Use of Language
31 Introduction
Autism is a lifelong developmental disability that affects how people perceive the world
and interact with others Autistic people see hear and feel the world differently to other
people Autism is a spectrum condition and often people feel being autistic is a
fundamental aspect of their identity All autistic people share certain difficulties but
being autistic will affect them in different ways11
The NHS states that autism is not an illness or disease but means a personrsquos brain
works in a different way from other people Some people with autism will also
have learning disabilities mental health issues (such as anxiety or depression)
or other conditions such as attention deficit hyperactivity disorder (ADHD) dyslexia
and epilepsy meaning people need different levels of support12
Qualitative differences in social interaction are arguably the core defining features of
the autism spectrum Such differences can result in social isolation and exclusion and
can potentially pervade all aspects of ordinary living such as relationships employment
and access to leisure and consumer experiences13
Some people with autism are able to live relatively independent lives but others may
face more challenges Areas of life that can be challenging include - socialising and
social interactions interpreting both spoken language and body language differences
in social imagination and difficulty in understanding abstract concepts which can make
11 What is Autism National Autistic Society httpswwwautismorgukaboutwhat-isasdaspx 12 What is Autism NHS httpswwwnhsukconditionsautismwhat-is-autism 13 What is Aspergerrsquos Syndrome Scottish Autism httpswwwscottishautismorgabout-autismabout-autismwhat-aspergers-
syndrome
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 6
it harder for people with autism to cope with new unfamiliar or unexpected situations
and lsquounderrsquo or lsquooverrsquo sensitivity in any of the senses (sight hearing and balance)14
32 Language used in Diagnosis of Autism
321 Profiles
The following information is directly extracted from the website of the National Autistic
Society15
All autistic people share certain difficulties but being autistic will affect them in different
ways These differences along with differences in diagnostic approach have resulted
in a variety of termslanguage being used to diagnose autistic people including autism
autism spectrum disorder (ASD) autism spectrum condition (ASC) atypical autism
classic autism Kanner autism pervasive developmental disorder (PDD) high-
functioning autism (HFA) Asperger syndrome and pathological demand
avoidance (PDA)
Because of recent changes to the main diagnostic manuals autism spectrum disorder
(ASD) is now likely to become the most commonly given diagnostic term However
clinicians will still often use additional terms to help to describe the particular autism
profile presented by an individual
Asperger syndrome profile
A clinician might describe someone as having an Asperger syndrome profile if there
has been no clinically significant delay in language or cognitive development but they
still have social communication difficulties They may also have specific delays in motor
development as well as motor clumsiness
Demand-avoidant profile
A clinician might describe a person as having a demand-avoidant profile or
pathological demand avoidance (PDA) if they are driven to excessively avoid demands
and expectations Underpinning this avoidance is an extremely high level of anxiety
about conforming to social demands and of not being in control of the situation
Misdiagnosis
Clinicians lacking autism experience may miss the fact that autism is underlying the
obvious difficulties seen on the surface and make clinical observations that do not take
the issues related to autism into account For example they may observe issues such
as a persons clumsiness (possible dyspraxia) reading difficulty (possible dyslexia)
14 What is autism Ambitious about Autism httpswwwambitiousaboutautismorgukinformation-about-autismunderstanding-autismwhat-is-autism
15 Autism profiles and diagnostic criteria National Autistic Society httpswwwautismorgukaboutdiagnosiscriteria-changesaspx
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 7
poor attention span (possible Attention Deficit Disorder) difficulty with social
communication (semantic pragmatic disorder or social communication disorder)
mental health issues or behavioural issues and diagnose that as the main condition
instead
322 International Classification of Diseases (ICD-11)
The ICD-11 is the most recent version of the most commonly used diagnostic manual
in the UK The information in this section is summarised from the website of Research
Autism16
In ICD-11 Autism Spectrum Disorder is characterised by persistent deficits in the
ability to initiate and to sustain reciprocal social interaction and social communication
and by a range of restricted repetitive and inflexible patterns of behaviour and
interests
The onset of the disorder occurs during the developmental period typically in early
childhood but symptoms may not fully manifest until later when social demands
exceed limited capacities
The deficits are sufficiently severe to cause impairment in personal family social
educational occupational or other important areas of functioning and are usually a
pervasive feature of the individualrsquos functioning observable in all settings although they
may vary according to social educational or other context Individuals along the
spectrum exhibit a full range of intellectual functioning and language abilities
ICD-11 also lists several sub-types of Autism Spectrum Disorder
6A020 - Autism spectrum disorder without disorder of intellectual development and
with mild or no impairment of functional language All definitional requirements for
autism spectrum disorder are met intellectual functioning and adaptive behaviour are
found to be at least within the average range (approximately greater than the 23rd
percentile) and there is only mild or no impairment in the individuals capacity to use
functional language (spoken or signed) for instrumental purposes such as to express
personal needs and desires
6A021 - Autism spectrum disorder with disorder of intellectual development and with
mild or no impairment of functional language All definitional requirements for both
autism spectrum disorder and disorder of intellectual development are met and there is
only mild or no impairment in the individuals capacity to use functional language
(spoken or signed) for instrumental purposes such as to express personal needs and
desires
16 Autism (Autism Spectrum Disorder) Diagnostic Criteria ICD-11 Research Autism
httpwwwresearchautismnetconditions7autism-(autism-spectrum-disorder)Diagnosis
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 8
6A022 - Autism spectrum disorder without disorder of intellectual development and
with impaired functional language All definitional requirements for autism spectrum
disorder are met Intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is marked impairment in functional language (spoken or signed) relative to the
individualrsquos age with the individual not able to use more than single words or simple
phrases for instrumental purposes such as to express personal needs and desires
6A023 - Autism spectrum disorder with disorder of intellectual development and with
impaired functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is marked
impairment in functional language (spoken or signed) relative to the individualrsquos age
with the individual not able to use more than single words or simple phrases for
instrumental purposes such as to express personal needs and desires
6A024 - Autism spectrum disorder without disorder of intellectual development and
with absence of functional language All definitional requirements for autism spectrum
disorder are met intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is complete or almost complete absence of ability relative to the individualrsquos age
to use functional language (spoken or signed) for instrumental purposes such as to
express personal needs and desires
6A025 - Autism spectrum disorder with disorder of intellectual development and with
absence of functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is complete or
almost complete absence of ability relative to the individualrsquos age to use functional
language (spoken or signed) for instrumental purposes such as to express personal
needs and desires
33 Language used to Describe Autism
331 Key Research Study
The complex nature of the autism spectrum gives rise to a range of personal and
professional perspectives It can therefore be a challenge to find a common language
that reflects the values and principles of the various groups who are invested in
advancing the understanding and support of people of all ages
A key study published in 2016 sought to elicit the views and preferences of the UK
autism community ndash autistic people parents and their broader support network ndash about
the terms they preferred to use to describe autism The findings demonstrated that
there is no single way of describing autism that was universally accepted and preferred
by the UKrsquos autism community and that some disagreements appeared deeply
entrenched The study found that the term lsquoautisticrsquo is preferred by adult individuals
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 9
(and their families) whilst professionals tend to prefer terms such as lsquoindividual with
autismrsquo17
In all 3470 UK residents responded to the online survey The results showed that the
most highly endorsed terms were lsquoautismrsquo and lsquoon the autism spectrumrsquo and to a lesser
extent lsquoautism spectrum disorderrsquo for which there was consensus across community
groups The groups disagreed however on the use of several terms The term
lsquoautisticrsquo was endorsed by a large percentage of autistic adults family membersfriends
and parents who responded to the survey but by considerably fewer professionals
lsquoPerson with autismrsquo was endorsed by almost half of professionals but by fewer autistic
adults and parents
332 NHS England Learning Disability and Autism Advisory Group (2017)
In 2017 the NHS England Learning Disability and Autism Advisory Group published
the results of focus group work with autistic people The advisory group helps NHS
England with work that affects people with a learning disability autism or both and their
families The group is made up of 15 experts by experience which includes people
with a learning disability autism or both and their families Its members are used to
speaking out and have good connections with local and national learning disability and
autism groups
Part of the discussions were around the lsquoDos Donrsquots and Maybesrsquo of good language
about autism using the research referred to in Section 32 above as a starting point
The results included18
When talking with people DO
Talk about autistic people rather than people with autism
Talk to people as humans - as you would talk to someone in your family
Use clear precise concise everyday language
Consider alternative communication
NHS communications need to be clear and concise for everyone and
Think of us as individuals not as labels
In news or campaigns DO
Use social model of disability in language
If you run a campaign launch it positively and actively - communicate about positives of autism not just negatives
17 Kenny L et al (2016) Which terms should be used to describe autism Perspectives from the UK autism community
Autism 20(4)442-62 httpspubmedncbinlmnihgov26134030
18 Autism focus 2 lsquoYou Said We Didrsquo NHS England Learning Disability and Autism Advisory Group Learning Disability and
Autism Engagement Team December 2017 httpswwwenglandnhsukwp-contentuploads201803focus-on-autism-2-plain-
englishpdf
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 10
Talk about difference not different
Promote communication by and from autistic people and their parents and
Talk about how to talk to people in a way that includes autistic people
DO NOT
Use the medical model of disability
Use the labels lsquohighrsquo or lsquolowrsquo functioning as they can mask the need for support People who are described as lsquohigh functioningrsquo can become suicidal
Confuse autism with learning disability - 75 of autistic people do not have a learning disability
Be paternalistic- talk to people as equals
Limit people for example by talking about the kind of jobs autistic people would do (they can do all sorts of jobs)
Say lsquochallenging behaviourrsquo or lsquobehaviour that challengesrsquo- could talk about lsquopotentially violent behaviourrsquo
Do not talk about lsquohow to talk to autistic peoplersquo as this implies a huge difference
Do not talk about treatment ndash it is the National Health Service not the National Treatment Service
Do not assume if someone does not talk that they do not understand or that they cannot be involved
There was discussion around the need for better language on lsquochallenging behaviourrsquo
Some autistic people preferred the term lsquoa risk to self or othersrsquo but others preferred
lsquopotentially violent behaviourrsquo In the absence of a clear preference the group
concluded that the term lsquobehaviour that challenges servicesrsquo was to be used in the
interim
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 11
334 Getting the Language Right about Autism
Based on the work of the NHS England Learning Disability and Autism Advisory Group
NHS England have published five top tips and a table offering best practice on the
language to use when talking about autism19
1 Talk about autism positively Many autistic people see autism as part of who
they are rather than something separate and prefer to be described as
lsquoautisticrsquo or lsquoon the autism spectrumrsquo ndash rather than as lsquosomeone with autismrsquo
2 Do not use negative language like lsquosuffering from autismrsquo lsquosymptomsrsquo and
lsquotreatrsquo Instead talk about characteristics support and reasonable
adjustments
3 Every autistic person is different Try to make sure people know this in all
communications
4 Autism is not a learning disability or a mental illness However some autistic
people also have a learning disability and many people have a mental health
problem
5 Some people on the autism spectrum understand language very literally
Avoid phrases that do not say what they mean Like ldquoitrsquos raining cats and
dogsrdquo Use clear everyday language
19 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 2
1 Context
This briefing paper has been prepared to support the development of a potential
Private Memberrsquos Bill concerning Autism The paper focuses on two separate topics (i)
Programmes of Care within the NI Health and Social Care (HSC) System (current and
the potential for a new one specific to lsquosocial and communication disabilitiesrsquo) and (ii)
an introduction to the best practice around the use of language in the UK for the
diagnosis of autism and to describe autism
2 Programmes of Care
21 Current Programmes of Care in the HSC in NI
Programmes of Care within the Northern Ireland (NI) HSC are divisions of healthcare
into which activity and finance data are assigned to provide a common management
framework They are used to plan and monitor the health service by allowing
performance to be measured targets set and services managed on a comparative
basis1 In total there are nine Programmes of Care (PoC)2
PoC1 ndash Acute Services
PoC2 ndash Maternity and Child Health
PoC3 ndash Family and Child Care
PoC4 ndash Elderly Care
PoC5 ndash Mental Health
PoC6 ndash Learning Disability
PoC7 ndash Physical and Sensory Disability
PoC8 ndash Health Promotion amp Disease Prevention
PoC9 ndash Primary Health and Adult Community
The Northern Ireland Capitation Formula is used by the Health and Social Care Board
(HSCB) to determine the lsquotarget fair sharesrsquo of the available resources for hospital and
community services which should be used to serve the population of each Local
Commissioning Group (LCG) These services are then commissioned from the Health
1 Hospital Activity Outpatient Statistics Statistics 201819 Department of Health Information Analysis Directorate Appendix 5
Appendix 5 Hospital Specialties by Programme of Care httpswwwhealth-nigovuksitesdefaultfilespublicationshealthhs-
outpatient-stats-18-19pdf 2 Factsheet ndash Northern Ireland Capitation Formula Department of Health NI (July 2014) httpswwwhealth-
nigovukpublicationscapitation-formula-factsheet
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 3
and Social Care Trusts (HSCT) by the HSCB The current capitation formula is based
on the Programme of Care (PoC) approach
Each PoC listed above has its own formula to determine it shares of resources
however PoCs 1 and 2 each have two formulae to determine how their shares should
be allocated Each of the PoC formula comprises of three elements the Relevant
Population the AgeGender Weightings and the Additional Needs Weighting3
It is likely that presently funding for services for Autism fall under at least three PoC -
PoC 5 PoC 6 and PoC 7 The Member is proposing that this may not be suitable and
that a new separate PoC be considered for Social and Communication Disability
22 Potential for a New PoC in NI
In terms of understanding the origins of the current PoC and the potential to instigate a
new PoC RaISe posed a number of questions via email to the Department of Health
as follows
When and how were the current nine PoC established
Are the PoC set out in legislation anywhere or are they an administrative
construct and
If there were to be a new PoC ndash what would the process be for its
establishment
The response from the DoH can be found in follow-up RaISe briefing NIAR-208-2020
As stated above the HSCB in NI commissions services from the HSC Trusts and the
current capitation formula for allocation of resources is based on the Programme of
Care (PoC) approach The following paragraphs take a brief look at the commissioning
systems in England Scotland and Wales
For England NHS England and its partners set the overall commissioning strategy
and clinical priorities for the NHS NHS England commissions primary medical
services (for GPs this is mostly devolved to Clinical Commissioning Groups (CCGs)
lsquospecialisedrsquo services (such as treatments for rare conditions and secure mental health
care) military and veteran health services health care in prisons and also some public
health services4
The lsquospecialisedrsquo services are grouped into six National Programmes of Care
(NPoC) Each has an NPoC Board which coordinates and prioritises work across the
3 Factsheet ndash Northern Ireland Capitation Formula Department of Health NI (July 2014) httpswwwhealth-
nigovukpublicationscapitation-formula-factsheet 4 NHS Commissioning httpswwwenglandnhsukcommissioningwho-commissions-nhs-servicesnhs-england
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 4
services in that programme of care The six NPoCrsquos are ndash Internal Medicine Cancer
Mental Health Trauma Women and Children and Blood and Infection5
The CCGs are groups of general practices (GPs) in each area to commission services
for their patients and population CCGs commission most secondary care services
and play a part in the commissioning of GP services CCGs commission planned
hospital care rehabilitative care urgent and emergency care community health
services learning disability andor autism services and mental health services6
In Scotland the Scottish Government sets national objectives and priorities for the
NHS and signs delivery plans with each NHS Board and Special NHS Board There are
14 NHS Boards and seven national or lsquospecialrsquo NHS Boards providing national
services NHS Boards in Scotland are all-purpose organisations they plan
commission and deliver hospital and community NHS services At local level there are
committees of the NHS Boards called community health partnerships or community
health and social care partnerships NHS Boards work together regionally and
nationally to plan and commission specialist services such as heart and lung surgery
and neurosurgery7
The Scottish Resource Allocation Formula is used in the allocation of around 70 of
the total NHS Budget between the 14 NHS Boards in Scotland The Formula
calculates target shares (percentages) for each NHS Board based on a weighted
capitation approach that starts with the number of people resident in each NHS Board
area The formula then makes adjustments for the agesex profile of the NHS Board
population additional needs based on morbidity and life circumstances (including
deprivation) and the excess costs of providing services in different geographical
areas89
In Wales health services are managed and delivered by seven local health boards
(LHBs) These Boards are both commissioners and providers of services in their areas
with responsibility for the health of their local population This means that they deliver
or commission the full range of health services Unlike the other six the Powys Health
Board commissions many of its hospital services from across the border in England
and is much less involved in directly providing secondary hospital care10
A RaISe initial literature research revealed little reference to the use of PoC outside
of the NI HSC (apart from NHS Englandrsquos NPoC) To gain more certainty about the
5 National Programmes of Care and Clinical Reference Groups NHS England httpswwwenglandnhsukcommissioningspec-servicesnpc-crg 6 NHS England CCGs httpswwwenglandnhsukcommissioningwho-commissions-nhs-servicesccgs 7 NHS Scotland How it Works httpwwwournhsscotlandcomour-nhsnhsscotland-how-it-works 8 The final shares actually allocated to the Boards are different from the target shares calculated by the formula The policy of
the Scottish Government Health Directorate is to phase in the Formula by way of differential growth whereby all Boards would continue to enjoy real-terms growth in their allocations year-on-year with those above parity (ie above their formula target share) receiving less growth than those below parity until the new distribution was achieved
9 Resource Allocation Formula Public Health Scotland httpswwwisdscotlandorgHealth-TopicsFinanceResource-Allocation-Formula
10 Worthington Dr P (2019) Is healthcare in Wales really that different Wales Centre for Public Policy 21st October 2019 httpswwwwcpporgukcommentaryis-healthcare-in-wales-really-that-different
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 5
use or otherwise of PoC in neighbouring jurisdictions (to assign resources or manage
services) RaISe then posed a number of questions via email to NHS England NHS
Scotland NHS Wales and also to the HSE in the Republic of Ireland as follows and
referring to the PoC in NI
Is there a similar system in use within NHS EnglandScotlandWales or in the
HSE
If not what is the system used to assign finance to areas of healthcare
If there are such PoC in use ndash in which one does Autism Services sit or belong
The responses from the DoH can be found in follow-up RaISe update briefing NIAR-
208-2020
3 Autism and Use of Language
31 Introduction
Autism is a lifelong developmental disability that affects how people perceive the world
and interact with others Autistic people see hear and feel the world differently to other
people Autism is a spectrum condition and often people feel being autistic is a
fundamental aspect of their identity All autistic people share certain difficulties but
being autistic will affect them in different ways11
The NHS states that autism is not an illness or disease but means a personrsquos brain
works in a different way from other people Some people with autism will also
have learning disabilities mental health issues (such as anxiety or depression)
or other conditions such as attention deficit hyperactivity disorder (ADHD) dyslexia
and epilepsy meaning people need different levels of support12
Qualitative differences in social interaction are arguably the core defining features of
the autism spectrum Such differences can result in social isolation and exclusion and
can potentially pervade all aspects of ordinary living such as relationships employment
and access to leisure and consumer experiences13
Some people with autism are able to live relatively independent lives but others may
face more challenges Areas of life that can be challenging include - socialising and
social interactions interpreting both spoken language and body language differences
in social imagination and difficulty in understanding abstract concepts which can make
11 What is Autism National Autistic Society httpswwwautismorgukaboutwhat-isasdaspx 12 What is Autism NHS httpswwwnhsukconditionsautismwhat-is-autism 13 What is Aspergerrsquos Syndrome Scottish Autism httpswwwscottishautismorgabout-autismabout-autismwhat-aspergers-
syndrome
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 6
it harder for people with autism to cope with new unfamiliar or unexpected situations
and lsquounderrsquo or lsquooverrsquo sensitivity in any of the senses (sight hearing and balance)14
32 Language used in Diagnosis of Autism
321 Profiles
The following information is directly extracted from the website of the National Autistic
Society15
All autistic people share certain difficulties but being autistic will affect them in different
ways These differences along with differences in diagnostic approach have resulted
in a variety of termslanguage being used to diagnose autistic people including autism
autism spectrum disorder (ASD) autism spectrum condition (ASC) atypical autism
classic autism Kanner autism pervasive developmental disorder (PDD) high-
functioning autism (HFA) Asperger syndrome and pathological demand
avoidance (PDA)
Because of recent changes to the main diagnostic manuals autism spectrum disorder
(ASD) is now likely to become the most commonly given diagnostic term However
clinicians will still often use additional terms to help to describe the particular autism
profile presented by an individual
Asperger syndrome profile
A clinician might describe someone as having an Asperger syndrome profile if there
has been no clinically significant delay in language or cognitive development but they
still have social communication difficulties They may also have specific delays in motor
development as well as motor clumsiness
Demand-avoidant profile
A clinician might describe a person as having a demand-avoidant profile or
pathological demand avoidance (PDA) if they are driven to excessively avoid demands
and expectations Underpinning this avoidance is an extremely high level of anxiety
about conforming to social demands and of not being in control of the situation
Misdiagnosis
Clinicians lacking autism experience may miss the fact that autism is underlying the
obvious difficulties seen on the surface and make clinical observations that do not take
the issues related to autism into account For example they may observe issues such
as a persons clumsiness (possible dyspraxia) reading difficulty (possible dyslexia)
14 What is autism Ambitious about Autism httpswwwambitiousaboutautismorgukinformation-about-autismunderstanding-autismwhat-is-autism
15 Autism profiles and diagnostic criteria National Autistic Society httpswwwautismorgukaboutdiagnosiscriteria-changesaspx
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 7
poor attention span (possible Attention Deficit Disorder) difficulty with social
communication (semantic pragmatic disorder or social communication disorder)
mental health issues or behavioural issues and diagnose that as the main condition
instead
322 International Classification of Diseases (ICD-11)
The ICD-11 is the most recent version of the most commonly used diagnostic manual
in the UK The information in this section is summarised from the website of Research
Autism16
In ICD-11 Autism Spectrum Disorder is characterised by persistent deficits in the
ability to initiate and to sustain reciprocal social interaction and social communication
and by a range of restricted repetitive and inflexible patterns of behaviour and
interests
The onset of the disorder occurs during the developmental period typically in early
childhood but symptoms may not fully manifest until later when social demands
exceed limited capacities
The deficits are sufficiently severe to cause impairment in personal family social
educational occupational or other important areas of functioning and are usually a
pervasive feature of the individualrsquos functioning observable in all settings although they
may vary according to social educational or other context Individuals along the
spectrum exhibit a full range of intellectual functioning and language abilities
ICD-11 also lists several sub-types of Autism Spectrum Disorder
6A020 - Autism spectrum disorder without disorder of intellectual development and
with mild or no impairment of functional language All definitional requirements for
autism spectrum disorder are met intellectual functioning and adaptive behaviour are
found to be at least within the average range (approximately greater than the 23rd
percentile) and there is only mild or no impairment in the individuals capacity to use
functional language (spoken or signed) for instrumental purposes such as to express
personal needs and desires
6A021 - Autism spectrum disorder with disorder of intellectual development and with
mild or no impairment of functional language All definitional requirements for both
autism spectrum disorder and disorder of intellectual development are met and there is
only mild or no impairment in the individuals capacity to use functional language
(spoken or signed) for instrumental purposes such as to express personal needs and
desires
16 Autism (Autism Spectrum Disorder) Diagnostic Criteria ICD-11 Research Autism
httpwwwresearchautismnetconditions7autism-(autism-spectrum-disorder)Diagnosis
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 8
6A022 - Autism spectrum disorder without disorder of intellectual development and
with impaired functional language All definitional requirements for autism spectrum
disorder are met Intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is marked impairment in functional language (spoken or signed) relative to the
individualrsquos age with the individual not able to use more than single words or simple
phrases for instrumental purposes such as to express personal needs and desires
6A023 - Autism spectrum disorder with disorder of intellectual development and with
impaired functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is marked
impairment in functional language (spoken or signed) relative to the individualrsquos age
with the individual not able to use more than single words or simple phrases for
instrumental purposes such as to express personal needs and desires
6A024 - Autism spectrum disorder without disorder of intellectual development and
with absence of functional language All definitional requirements for autism spectrum
disorder are met intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is complete or almost complete absence of ability relative to the individualrsquos age
to use functional language (spoken or signed) for instrumental purposes such as to
express personal needs and desires
6A025 - Autism spectrum disorder with disorder of intellectual development and with
absence of functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is complete or
almost complete absence of ability relative to the individualrsquos age to use functional
language (spoken or signed) for instrumental purposes such as to express personal
needs and desires
33 Language used to Describe Autism
331 Key Research Study
The complex nature of the autism spectrum gives rise to a range of personal and
professional perspectives It can therefore be a challenge to find a common language
that reflects the values and principles of the various groups who are invested in
advancing the understanding and support of people of all ages
A key study published in 2016 sought to elicit the views and preferences of the UK
autism community ndash autistic people parents and their broader support network ndash about
the terms they preferred to use to describe autism The findings demonstrated that
there is no single way of describing autism that was universally accepted and preferred
by the UKrsquos autism community and that some disagreements appeared deeply
entrenched The study found that the term lsquoautisticrsquo is preferred by adult individuals
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 9
(and their families) whilst professionals tend to prefer terms such as lsquoindividual with
autismrsquo17
In all 3470 UK residents responded to the online survey The results showed that the
most highly endorsed terms were lsquoautismrsquo and lsquoon the autism spectrumrsquo and to a lesser
extent lsquoautism spectrum disorderrsquo for which there was consensus across community
groups The groups disagreed however on the use of several terms The term
lsquoautisticrsquo was endorsed by a large percentage of autistic adults family membersfriends
and parents who responded to the survey but by considerably fewer professionals
lsquoPerson with autismrsquo was endorsed by almost half of professionals but by fewer autistic
adults and parents
332 NHS England Learning Disability and Autism Advisory Group (2017)
In 2017 the NHS England Learning Disability and Autism Advisory Group published
the results of focus group work with autistic people The advisory group helps NHS
England with work that affects people with a learning disability autism or both and their
families The group is made up of 15 experts by experience which includes people
with a learning disability autism or both and their families Its members are used to
speaking out and have good connections with local and national learning disability and
autism groups
Part of the discussions were around the lsquoDos Donrsquots and Maybesrsquo of good language
about autism using the research referred to in Section 32 above as a starting point
The results included18
When talking with people DO
Talk about autistic people rather than people with autism
Talk to people as humans - as you would talk to someone in your family
Use clear precise concise everyday language
Consider alternative communication
NHS communications need to be clear and concise for everyone and
Think of us as individuals not as labels
In news or campaigns DO
Use social model of disability in language
If you run a campaign launch it positively and actively - communicate about positives of autism not just negatives
17 Kenny L et al (2016) Which terms should be used to describe autism Perspectives from the UK autism community
Autism 20(4)442-62 httpspubmedncbinlmnihgov26134030
18 Autism focus 2 lsquoYou Said We Didrsquo NHS England Learning Disability and Autism Advisory Group Learning Disability and
Autism Engagement Team December 2017 httpswwwenglandnhsukwp-contentuploads201803focus-on-autism-2-plain-
englishpdf
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 10
Talk about difference not different
Promote communication by and from autistic people and their parents and
Talk about how to talk to people in a way that includes autistic people
DO NOT
Use the medical model of disability
Use the labels lsquohighrsquo or lsquolowrsquo functioning as they can mask the need for support People who are described as lsquohigh functioningrsquo can become suicidal
Confuse autism with learning disability - 75 of autistic people do not have a learning disability
Be paternalistic- talk to people as equals
Limit people for example by talking about the kind of jobs autistic people would do (they can do all sorts of jobs)
Say lsquochallenging behaviourrsquo or lsquobehaviour that challengesrsquo- could talk about lsquopotentially violent behaviourrsquo
Do not talk about lsquohow to talk to autistic peoplersquo as this implies a huge difference
Do not talk about treatment ndash it is the National Health Service not the National Treatment Service
Do not assume if someone does not talk that they do not understand or that they cannot be involved
There was discussion around the need for better language on lsquochallenging behaviourrsquo
Some autistic people preferred the term lsquoa risk to self or othersrsquo but others preferred
lsquopotentially violent behaviourrsquo In the absence of a clear preference the group
concluded that the term lsquobehaviour that challenges servicesrsquo was to be used in the
interim
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 11
334 Getting the Language Right about Autism
Based on the work of the NHS England Learning Disability and Autism Advisory Group
NHS England have published five top tips and a table offering best practice on the
language to use when talking about autism19
1 Talk about autism positively Many autistic people see autism as part of who
they are rather than something separate and prefer to be described as
lsquoautisticrsquo or lsquoon the autism spectrumrsquo ndash rather than as lsquosomeone with autismrsquo
2 Do not use negative language like lsquosuffering from autismrsquo lsquosymptomsrsquo and
lsquotreatrsquo Instead talk about characteristics support and reasonable
adjustments
3 Every autistic person is different Try to make sure people know this in all
communications
4 Autism is not a learning disability or a mental illness However some autistic
people also have a learning disability and many people have a mental health
problem
5 Some people on the autism spectrum understand language very literally
Avoid phrases that do not say what they mean Like ldquoitrsquos raining cats and
dogsrdquo Use clear everyday language
19 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 3
and Social Care Trusts (HSCT) by the HSCB The current capitation formula is based
on the Programme of Care (PoC) approach
Each PoC listed above has its own formula to determine it shares of resources
however PoCs 1 and 2 each have two formulae to determine how their shares should
be allocated Each of the PoC formula comprises of three elements the Relevant
Population the AgeGender Weightings and the Additional Needs Weighting3
It is likely that presently funding for services for Autism fall under at least three PoC -
PoC 5 PoC 6 and PoC 7 The Member is proposing that this may not be suitable and
that a new separate PoC be considered for Social and Communication Disability
22 Potential for a New PoC in NI
In terms of understanding the origins of the current PoC and the potential to instigate a
new PoC RaISe posed a number of questions via email to the Department of Health
as follows
When and how were the current nine PoC established
Are the PoC set out in legislation anywhere or are they an administrative
construct and
If there were to be a new PoC ndash what would the process be for its
establishment
The response from the DoH can be found in follow-up RaISe briefing NIAR-208-2020
As stated above the HSCB in NI commissions services from the HSC Trusts and the
current capitation formula for allocation of resources is based on the Programme of
Care (PoC) approach The following paragraphs take a brief look at the commissioning
systems in England Scotland and Wales
For England NHS England and its partners set the overall commissioning strategy
and clinical priorities for the NHS NHS England commissions primary medical
services (for GPs this is mostly devolved to Clinical Commissioning Groups (CCGs)
lsquospecialisedrsquo services (such as treatments for rare conditions and secure mental health
care) military and veteran health services health care in prisons and also some public
health services4
The lsquospecialisedrsquo services are grouped into six National Programmes of Care
(NPoC) Each has an NPoC Board which coordinates and prioritises work across the
3 Factsheet ndash Northern Ireland Capitation Formula Department of Health NI (July 2014) httpswwwhealth-
nigovukpublicationscapitation-formula-factsheet 4 NHS Commissioning httpswwwenglandnhsukcommissioningwho-commissions-nhs-servicesnhs-england
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 4
services in that programme of care The six NPoCrsquos are ndash Internal Medicine Cancer
Mental Health Trauma Women and Children and Blood and Infection5
The CCGs are groups of general practices (GPs) in each area to commission services
for their patients and population CCGs commission most secondary care services
and play a part in the commissioning of GP services CCGs commission planned
hospital care rehabilitative care urgent and emergency care community health
services learning disability andor autism services and mental health services6
In Scotland the Scottish Government sets national objectives and priorities for the
NHS and signs delivery plans with each NHS Board and Special NHS Board There are
14 NHS Boards and seven national or lsquospecialrsquo NHS Boards providing national
services NHS Boards in Scotland are all-purpose organisations they plan
commission and deliver hospital and community NHS services At local level there are
committees of the NHS Boards called community health partnerships or community
health and social care partnerships NHS Boards work together regionally and
nationally to plan and commission specialist services such as heart and lung surgery
and neurosurgery7
The Scottish Resource Allocation Formula is used in the allocation of around 70 of
the total NHS Budget between the 14 NHS Boards in Scotland The Formula
calculates target shares (percentages) for each NHS Board based on a weighted
capitation approach that starts with the number of people resident in each NHS Board
area The formula then makes adjustments for the agesex profile of the NHS Board
population additional needs based on morbidity and life circumstances (including
deprivation) and the excess costs of providing services in different geographical
areas89
In Wales health services are managed and delivered by seven local health boards
(LHBs) These Boards are both commissioners and providers of services in their areas
with responsibility for the health of their local population This means that they deliver
or commission the full range of health services Unlike the other six the Powys Health
Board commissions many of its hospital services from across the border in England
and is much less involved in directly providing secondary hospital care10
A RaISe initial literature research revealed little reference to the use of PoC outside
of the NI HSC (apart from NHS Englandrsquos NPoC) To gain more certainty about the
5 National Programmes of Care and Clinical Reference Groups NHS England httpswwwenglandnhsukcommissioningspec-servicesnpc-crg 6 NHS England CCGs httpswwwenglandnhsukcommissioningwho-commissions-nhs-servicesccgs 7 NHS Scotland How it Works httpwwwournhsscotlandcomour-nhsnhsscotland-how-it-works 8 The final shares actually allocated to the Boards are different from the target shares calculated by the formula The policy of
the Scottish Government Health Directorate is to phase in the Formula by way of differential growth whereby all Boards would continue to enjoy real-terms growth in their allocations year-on-year with those above parity (ie above their formula target share) receiving less growth than those below parity until the new distribution was achieved
9 Resource Allocation Formula Public Health Scotland httpswwwisdscotlandorgHealth-TopicsFinanceResource-Allocation-Formula
10 Worthington Dr P (2019) Is healthcare in Wales really that different Wales Centre for Public Policy 21st October 2019 httpswwwwcpporgukcommentaryis-healthcare-in-wales-really-that-different
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 5
use or otherwise of PoC in neighbouring jurisdictions (to assign resources or manage
services) RaISe then posed a number of questions via email to NHS England NHS
Scotland NHS Wales and also to the HSE in the Republic of Ireland as follows and
referring to the PoC in NI
Is there a similar system in use within NHS EnglandScotlandWales or in the
HSE
If not what is the system used to assign finance to areas of healthcare
If there are such PoC in use ndash in which one does Autism Services sit or belong
The responses from the DoH can be found in follow-up RaISe update briefing NIAR-
208-2020
3 Autism and Use of Language
31 Introduction
Autism is a lifelong developmental disability that affects how people perceive the world
and interact with others Autistic people see hear and feel the world differently to other
people Autism is a spectrum condition and often people feel being autistic is a
fundamental aspect of their identity All autistic people share certain difficulties but
being autistic will affect them in different ways11
The NHS states that autism is not an illness or disease but means a personrsquos brain
works in a different way from other people Some people with autism will also
have learning disabilities mental health issues (such as anxiety or depression)
or other conditions such as attention deficit hyperactivity disorder (ADHD) dyslexia
and epilepsy meaning people need different levels of support12
Qualitative differences in social interaction are arguably the core defining features of
the autism spectrum Such differences can result in social isolation and exclusion and
can potentially pervade all aspects of ordinary living such as relationships employment
and access to leisure and consumer experiences13
Some people with autism are able to live relatively independent lives but others may
face more challenges Areas of life that can be challenging include - socialising and
social interactions interpreting both spoken language and body language differences
in social imagination and difficulty in understanding abstract concepts which can make
11 What is Autism National Autistic Society httpswwwautismorgukaboutwhat-isasdaspx 12 What is Autism NHS httpswwwnhsukconditionsautismwhat-is-autism 13 What is Aspergerrsquos Syndrome Scottish Autism httpswwwscottishautismorgabout-autismabout-autismwhat-aspergers-
syndrome
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 6
it harder for people with autism to cope with new unfamiliar or unexpected situations
and lsquounderrsquo or lsquooverrsquo sensitivity in any of the senses (sight hearing and balance)14
32 Language used in Diagnosis of Autism
321 Profiles
The following information is directly extracted from the website of the National Autistic
Society15
All autistic people share certain difficulties but being autistic will affect them in different
ways These differences along with differences in diagnostic approach have resulted
in a variety of termslanguage being used to diagnose autistic people including autism
autism spectrum disorder (ASD) autism spectrum condition (ASC) atypical autism
classic autism Kanner autism pervasive developmental disorder (PDD) high-
functioning autism (HFA) Asperger syndrome and pathological demand
avoidance (PDA)
Because of recent changes to the main diagnostic manuals autism spectrum disorder
(ASD) is now likely to become the most commonly given diagnostic term However
clinicians will still often use additional terms to help to describe the particular autism
profile presented by an individual
Asperger syndrome profile
A clinician might describe someone as having an Asperger syndrome profile if there
has been no clinically significant delay in language or cognitive development but they
still have social communication difficulties They may also have specific delays in motor
development as well as motor clumsiness
Demand-avoidant profile
A clinician might describe a person as having a demand-avoidant profile or
pathological demand avoidance (PDA) if they are driven to excessively avoid demands
and expectations Underpinning this avoidance is an extremely high level of anxiety
about conforming to social demands and of not being in control of the situation
Misdiagnosis
Clinicians lacking autism experience may miss the fact that autism is underlying the
obvious difficulties seen on the surface and make clinical observations that do not take
the issues related to autism into account For example they may observe issues such
as a persons clumsiness (possible dyspraxia) reading difficulty (possible dyslexia)
14 What is autism Ambitious about Autism httpswwwambitiousaboutautismorgukinformation-about-autismunderstanding-autismwhat-is-autism
15 Autism profiles and diagnostic criteria National Autistic Society httpswwwautismorgukaboutdiagnosiscriteria-changesaspx
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 7
poor attention span (possible Attention Deficit Disorder) difficulty with social
communication (semantic pragmatic disorder or social communication disorder)
mental health issues or behavioural issues and diagnose that as the main condition
instead
322 International Classification of Diseases (ICD-11)
The ICD-11 is the most recent version of the most commonly used diagnostic manual
in the UK The information in this section is summarised from the website of Research
Autism16
In ICD-11 Autism Spectrum Disorder is characterised by persistent deficits in the
ability to initiate and to sustain reciprocal social interaction and social communication
and by a range of restricted repetitive and inflexible patterns of behaviour and
interests
The onset of the disorder occurs during the developmental period typically in early
childhood but symptoms may not fully manifest until later when social demands
exceed limited capacities
The deficits are sufficiently severe to cause impairment in personal family social
educational occupational or other important areas of functioning and are usually a
pervasive feature of the individualrsquos functioning observable in all settings although they
may vary according to social educational or other context Individuals along the
spectrum exhibit a full range of intellectual functioning and language abilities
ICD-11 also lists several sub-types of Autism Spectrum Disorder
6A020 - Autism spectrum disorder without disorder of intellectual development and
with mild or no impairment of functional language All definitional requirements for
autism spectrum disorder are met intellectual functioning and adaptive behaviour are
found to be at least within the average range (approximately greater than the 23rd
percentile) and there is only mild or no impairment in the individuals capacity to use
functional language (spoken or signed) for instrumental purposes such as to express
personal needs and desires
6A021 - Autism spectrum disorder with disorder of intellectual development and with
mild or no impairment of functional language All definitional requirements for both
autism spectrum disorder and disorder of intellectual development are met and there is
only mild or no impairment in the individuals capacity to use functional language
(spoken or signed) for instrumental purposes such as to express personal needs and
desires
16 Autism (Autism Spectrum Disorder) Diagnostic Criteria ICD-11 Research Autism
httpwwwresearchautismnetconditions7autism-(autism-spectrum-disorder)Diagnosis
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 8
6A022 - Autism spectrum disorder without disorder of intellectual development and
with impaired functional language All definitional requirements for autism spectrum
disorder are met Intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is marked impairment in functional language (spoken or signed) relative to the
individualrsquos age with the individual not able to use more than single words or simple
phrases for instrumental purposes such as to express personal needs and desires
6A023 - Autism spectrum disorder with disorder of intellectual development and with
impaired functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is marked
impairment in functional language (spoken or signed) relative to the individualrsquos age
with the individual not able to use more than single words or simple phrases for
instrumental purposes such as to express personal needs and desires
6A024 - Autism spectrum disorder without disorder of intellectual development and
with absence of functional language All definitional requirements for autism spectrum
disorder are met intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is complete or almost complete absence of ability relative to the individualrsquos age
to use functional language (spoken or signed) for instrumental purposes such as to
express personal needs and desires
6A025 - Autism spectrum disorder with disorder of intellectual development and with
absence of functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is complete or
almost complete absence of ability relative to the individualrsquos age to use functional
language (spoken or signed) for instrumental purposes such as to express personal
needs and desires
33 Language used to Describe Autism
331 Key Research Study
The complex nature of the autism spectrum gives rise to a range of personal and
professional perspectives It can therefore be a challenge to find a common language
that reflects the values and principles of the various groups who are invested in
advancing the understanding and support of people of all ages
A key study published in 2016 sought to elicit the views and preferences of the UK
autism community ndash autistic people parents and their broader support network ndash about
the terms they preferred to use to describe autism The findings demonstrated that
there is no single way of describing autism that was universally accepted and preferred
by the UKrsquos autism community and that some disagreements appeared deeply
entrenched The study found that the term lsquoautisticrsquo is preferred by adult individuals
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 9
(and their families) whilst professionals tend to prefer terms such as lsquoindividual with
autismrsquo17
In all 3470 UK residents responded to the online survey The results showed that the
most highly endorsed terms were lsquoautismrsquo and lsquoon the autism spectrumrsquo and to a lesser
extent lsquoautism spectrum disorderrsquo for which there was consensus across community
groups The groups disagreed however on the use of several terms The term
lsquoautisticrsquo was endorsed by a large percentage of autistic adults family membersfriends
and parents who responded to the survey but by considerably fewer professionals
lsquoPerson with autismrsquo was endorsed by almost half of professionals but by fewer autistic
adults and parents
332 NHS England Learning Disability and Autism Advisory Group (2017)
In 2017 the NHS England Learning Disability and Autism Advisory Group published
the results of focus group work with autistic people The advisory group helps NHS
England with work that affects people with a learning disability autism or both and their
families The group is made up of 15 experts by experience which includes people
with a learning disability autism or both and their families Its members are used to
speaking out and have good connections with local and national learning disability and
autism groups
Part of the discussions were around the lsquoDos Donrsquots and Maybesrsquo of good language
about autism using the research referred to in Section 32 above as a starting point
The results included18
When talking with people DO
Talk about autistic people rather than people with autism
Talk to people as humans - as you would talk to someone in your family
Use clear precise concise everyday language
Consider alternative communication
NHS communications need to be clear and concise for everyone and
Think of us as individuals not as labels
In news or campaigns DO
Use social model of disability in language
If you run a campaign launch it positively and actively - communicate about positives of autism not just negatives
17 Kenny L et al (2016) Which terms should be used to describe autism Perspectives from the UK autism community
Autism 20(4)442-62 httpspubmedncbinlmnihgov26134030
18 Autism focus 2 lsquoYou Said We Didrsquo NHS England Learning Disability and Autism Advisory Group Learning Disability and
Autism Engagement Team December 2017 httpswwwenglandnhsukwp-contentuploads201803focus-on-autism-2-plain-
englishpdf
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 10
Talk about difference not different
Promote communication by and from autistic people and their parents and
Talk about how to talk to people in a way that includes autistic people
DO NOT
Use the medical model of disability
Use the labels lsquohighrsquo or lsquolowrsquo functioning as they can mask the need for support People who are described as lsquohigh functioningrsquo can become suicidal
Confuse autism with learning disability - 75 of autistic people do not have a learning disability
Be paternalistic- talk to people as equals
Limit people for example by talking about the kind of jobs autistic people would do (they can do all sorts of jobs)
Say lsquochallenging behaviourrsquo or lsquobehaviour that challengesrsquo- could talk about lsquopotentially violent behaviourrsquo
Do not talk about lsquohow to talk to autistic peoplersquo as this implies a huge difference
Do not talk about treatment ndash it is the National Health Service not the National Treatment Service
Do not assume if someone does not talk that they do not understand or that they cannot be involved
There was discussion around the need for better language on lsquochallenging behaviourrsquo
Some autistic people preferred the term lsquoa risk to self or othersrsquo but others preferred
lsquopotentially violent behaviourrsquo In the absence of a clear preference the group
concluded that the term lsquobehaviour that challenges servicesrsquo was to be used in the
interim
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 11
334 Getting the Language Right about Autism
Based on the work of the NHS England Learning Disability and Autism Advisory Group
NHS England have published five top tips and a table offering best practice on the
language to use when talking about autism19
1 Talk about autism positively Many autistic people see autism as part of who
they are rather than something separate and prefer to be described as
lsquoautisticrsquo or lsquoon the autism spectrumrsquo ndash rather than as lsquosomeone with autismrsquo
2 Do not use negative language like lsquosuffering from autismrsquo lsquosymptomsrsquo and
lsquotreatrsquo Instead talk about characteristics support and reasonable
adjustments
3 Every autistic person is different Try to make sure people know this in all
communications
4 Autism is not a learning disability or a mental illness However some autistic
people also have a learning disability and many people have a mental health
problem
5 Some people on the autism spectrum understand language very literally
Avoid phrases that do not say what they mean Like ldquoitrsquos raining cats and
dogsrdquo Use clear everyday language
19 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 4
services in that programme of care The six NPoCrsquos are ndash Internal Medicine Cancer
Mental Health Trauma Women and Children and Blood and Infection5
The CCGs are groups of general practices (GPs) in each area to commission services
for their patients and population CCGs commission most secondary care services
and play a part in the commissioning of GP services CCGs commission planned
hospital care rehabilitative care urgent and emergency care community health
services learning disability andor autism services and mental health services6
In Scotland the Scottish Government sets national objectives and priorities for the
NHS and signs delivery plans with each NHS Board and Special NHS Board There are
14 NHS Boards and seven national or lsquospecialrsquo NHS Boards providing national
services NHS Boards in Scotland are all-purpose organisations they plan
commission and deliver hospital and community NHS services At local level there are
committees of the NHS Boards called community health partnerships or community
health and social care partnerships NHS Boards work together regionally and
nationally to plan and commission specialist services such as heart and lung surgery
and neurosurgery7
The Scottish Resource Allocation Formula is used in the allocation of around 70 of
the total NHS Budget between the 14 NHS Boards in Scotland The Formula
calculates target shares (percentages) for each NHS Board based on a weighted
capitation approach that starts with the number of people resident in each NHS Board
area The formula then makes adjustments for the agesex profile of the NHS Board
population additional needs based on morbidity and life circumstances (including
deprivation) and the excess costs of providing services in different geographical
areas89
In Wales health services are managed and delivered by seven local health boards
(LHBs) These Boards are both commissioners and providers of services in their areas
with responsibility for the health of their local population This means that they deliver
or commission the full range of health services Unlike the other six the Powys Health
Board commissions many of its hospital services from across the border in England
and is much less involved in directly providing secondary hospital care10
A RaISe initial literature research revealed little reference to the use of PoC outside
of the NI HSC (apart from NHS Englandrsquos NPoC) To gain more certainty about the
5 National Programmes of Care and Clinical Reference Groups NHS England httpswwwenglandnhsukcommissioningspec-servicesnpc-crg 6 NHS England CCGs httpswwwenglandnhsukcommissioningwho-commissions-nhs-servicesccgs 7 NHS Scotland How it Works httpwwwournhsscotlandcomour-nhsnhsscotland-how-it-works 8 The final shares actually allocated to the Boards are different from the target shares calculated by the formula The policy of
the Scottish Government Health Directorate is to phase in the Formula by way of differential growth whereby all Boards would continue to enjoy real-terms growth in their allocations year-on-year with those above parity (ie above their formula target share) receiving less growth than those below parity until the new distribution was achieved
9 Resource Allocation Formula Public Health Scotland httpswwwisdscotlandorgHealth-TopicsFinanceResource-Allocation-Formula
10 Worthington Dr P (2019) Is healthcare in Wales really that different Wales Centre for Public Policy 21st October 2019 httpswwwwcpporgukcommentaryis-healthcare-in-wales-really-that-different
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 5
use or otherwise of PoC in neighbouring jurisdictions (to assign resources or manage
services) RaISe then posed a number of questions via email to NHS England NHS
Scotland NHS Wales and also to the HSE in the Republic of Ireland as follows and
referring to the PoC in NI
Is there a similar system in use within NHS EnglandScotlandWales or in the
HSE
If not what is the system used to assign finance to areas of healthcare
If there are such PoC in use ndash in which one does Autism Services sit or belong
The responses from the DoH can be found in follow-up RaISe update briefing NIAR-
208-2020
3 Autism and Use of Language
31 Introduction
Autism is a lifelong developmental disability that affects how people perceive the world
and interact with others Autistic people see hear and feel the world differently to other
people Autism is a spectrum condition and often people feel being autistic is a
fundamental aspect of their identity All autistic people share certain difficulties but
being autistic will affect them in different ways11
The NHS states that autism is not an illness or disease but means a personrsquos brain
works in a different way from other people Some people with autism will also
have learning disabilities mental health issues (such as anxiety or depression)
or other conditions such as attention deficit hyperactivity disorder (ADHD) dyslexia
and epilepsy meaning people need different levels of support12
Qualitative differences in social interaction are arguably the core defining features of
the autism spectrum Such differences can result in social isolation and exclusion and
can potentially pervade all aspects of ordinary living such as relationships employment
and access to leisure and consumer experiences13
Some people with autism are able to live relatively independent lives but others may
face more challenges Areas of life that can be challenging include - socialising and
social interactions interpreting both spoken language and body language differences
in social imagination and difficulty in understanding abstract concepts which can make
11 What is Autism National Autistic Society httpswwwautismorgukaboutwhat-isasdaspx 12 What is Autism NHS httpswwwnhsukconditionsautismwhat-is-autism 13 What is Aspergerrsquos Syndrome Scottish Autism httpswwwscottishautismorgabout-autismabout-autismwhat-aspergers-
syndrome
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 6
it harder for people with autism to cope with new unfamiliar or unexpected situations
and lsquounderrsquo or lsquooverrsquo sensitivity in any of the senses (sight hearing and balance)14
32 Language used in Diagnosis of Autism
321 Profiles
The following information is directly extracted from the website of the National Autistic
Society15
All autistic people share certain difficulties but being autistic will affect them in different
ways These differences along with differences in diagnostic approach have resulted
in a variety of termslanguage being used to diagnose autistic people including autism
autism spectrum disorder (ASD) autism spectrum condition (ASC) atypical autism
classic autism Kanner autism pervasive developmental disorder (PDD) high-
functioning autism (HFA) Asperger syndrome and pathological demand
avoidance (PDA)
Because of recent changes to the main diagnostic manuals autism spectrum disorder
(ASD) is now likely to become the most commonly given diagnostic term However
clinicians will still often use additional terms to help to describe the particular autism
profile presented by an individual
Asperger syndrome profile
A clinician might describe someone as having an Asperger syndrome profile if there
has been no clinically significant delay in language or cognitive development but they
still have social communication difficulties They may also have specific delays in motor
development as well as motor clumsiness
Demand-avoidant profile
A clinician might describe a person as having a demand-avoidant profile or
pathological demand avoidance (PDA) if they are driven to excessively avoid demands
and expectations Underpinning this avoidance is an extremely high level of anxiety
about conforming to social demands and of not being in control of the situation
Misdiagnosis
Clinicians lacking autism experience may miss the fact that autism is underlying the
obvious difficulties seen on the surface and make clinical observations that do not take
the issues related to autism into account For example they may observe issues such
as a persons clumsiness (possible dyspraxia) reading difficulty (possible dyslexia)
14 What is autism Ambitious about Autism httpswwwambitiousaboutautismorgukinformation-about-autismunderstanding-autismwhat-is-autism
15 Autism profiles and diagnostic criteria National Autistic Society httpswwwautismorgukaboutdiagnosiscriteria-changesaspx
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 7
poor attention span (possible Attention Deficit Disorder) difficulty with social
communication (semantic pragmatic disorder or social communication disorder)
mental health issues or behavioural issues and diagnose that as the main condition
instead
322 International Classification of Diseases (ICD-11)
The ICD-11 is the most recent version of the most commonly used diagnostic manual
in the UK The information in this section is summarised from the website of Research
Autism16
In ICD-11 Autism Spectrum Disorder is characterised by persistent deficits in the
ability to initiate and to sustain reciprocal social interaction and social communication
and by a range of restricted repetitive and inflexible patterns of behaviour and
interests
The onset of the disorder occurs during the developmental period typically in early
childhood but symptoms may not fully manifest until later when social demands
exceed limited capacities
The deficits are sufficiently severe to cause impairment in personal family social
educational occupational or other important areas of functioning and are usually a
pervasive feature of the individualrsquos functioning observable in all settings although they
may vary according to social educational or other context Individuals along the
spectrum exhibit a full range of intellectual functioning and language abilities
ICD-11 also lists several sub-types of Autism Spectrum Disorder
6A020 - Autism spectrum disorder without disorder of intellectual development and
with mild or no impairment of functional language All definitional requirements for
autism spectrum disorder are met intellectual functioning and adaptive behaviour are
found to be at least within the average range (approximately greater than the 23rd
percentile) and there is only mild or no impairment in the individuals capacity to use
functional language (spoken or signed) for instrumental purposes such as to express
personal needs and desires
6A021 - Autism spectrum disorder with disorder of intellectual development and with
mild or no impairment of functional language All definitional requirements for both
autism spectrum disorder and disorder of intellectual development are met and there is
only mild or no impairment in the individuals capacity to use functional language
(spoken or signed) for instrumental purposes such as to express personal needs and
desires
16 Autism (Autism Spectrum Disorder) Diagnostic Criteria ICD-11 Research Autism
httpwwwresearchautismnetconditions7autism-(autism-spectrum-disorder)Diagnosis
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 8
6A022 - Autism spectrum disorder without disorder of intellectual development and
with impaired functional language All definitional requirements for autism spectrum
disorder are met Intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is marked impairment in functional language (spoken or signed) relative to the
individualrsquos age with the individual not able to use more than single words or simple
phrases for instrumental purposes such as to express personal needs and desires
6A023 - Autism spectrum disorder with disorder of intellectual development and with
impaired functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is marked
impairment in functional language (spoken or signed) relative to the individualrsquos age
with the individual not able to use more than single words or simple phrases for
instrumental purposes such as to express personal needs and desires
6A024 - Autism spectrum disorder without disorder of intellectual development and
with absence of functional language All definitional requirements for autism spectrum
disorder are met intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is complete or almost complete absence of ability relative to the individualrsquos age
to use functional language (spoken or signed) for instrumental purposes such as to
express personal needs and desires
6A025 - Autism spectrum disorder with disorder of intellectual development and with
absence of functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is complete or
almost complete absence of ability relative to the individualrsquos age to use functional
language (spoken or signed) for instrumental purposes such as to express personal
needs and desires
33 Language used to Describe Autism
331 Key Research Study
The complex nature of the autism spectrum gives rise to a range of personal and
professional perspectives It can therefore be a challenge to find a common language
that reflects the values and principles of the various groups who are invested in
advancing the understanding and support of people of all ages
A key study published in 2016 sought to elicit the views and preferences of the UK
autism community ndash autistic people parents and their broader support network ndash about
the terms they preferred to use to describe autism The findings demonstrated that
there is no single way of describing autism that was universally accepted and preferred
by the UKrsquos autism community and that some disagreements appeared deeply
entrenched The study found that the term lsquoautisticrsquo is preferred by adult individuals
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 9
(and their families) whilst professionals tend to prefer terms such as lsquoindividual with
autismrsquo17
In all 3470 UK residents responded to the online survey The results showed that the
most highly endorsed terms were lsquoautismrsquo and lsquoon the autism spectrumrsquo and to a lesser
extent lsquoautism spectrum disorderrsquo for which there was consensus across community
groups The groups disagreed however on the use of several terms The term
lsquoautisticrsquo was endorsed by a large percentage of autistic adults family membersfriends
and parents who responded to the survey but by considerably fewer professionals
lsquoPerson with autismrsquo was endorsed by almost half of professionals but by fewer autistic
adults and parents
332 NHS England Learning Disability and Autism Advisory Group (2017)
In 2017 the NHS England Learning Disability and Autism Advisory Group published
the results of focus group work with autistic people The advisory group helps NHS
England with work that affects people with a learning disability autism or both and their
families The group is made up of 15 experts by experience which includes people
with a learning disability autism or both and their families Its members are used to
speaking out and have good connections with local and national learning disability and
autism groups
Part of the discussions were around the lsquoDos Donrsquots and Maybesrsquo of good language
about autism using the research referred to in Section 32 above as a starting point
The results included18
When talking with people DO
Talk about autistic people rather than people with autism
Talk to people as humans - as you would talk to someone in your family
Use clear precise concise everyday language
Consider alternative communication
NHS communications need to be clear and concise for everyone and
Think of us as individuals not as labels
In news or campaigns DO
Use social model of disability in language
If you run a campaign launch it positively and actively - communicate about positives of autism not just negatives
17 Kenny L et al (2016) Which terms should be used to describe autism Perspectives from the UK autism community
Autism 20(4)442-62 httpspubmedncbinlmnihgov26134030
18 Autism focus 2 lsquoYou Said We Didrsquo NHS England Learning Disability and Autism Advisory Group Learning Disability and
Autism Engagement Team December 2017 httpswwwenglandnhsukwp-contentuploads201803focus-on-autism-2-plain-
englishpdf
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 10
Talk about difference not different
Promote communication by and from autistic people and their parents and
Talk about how to talk to people in a way that includes autistic people
DO NOT
Use the medical model of disability
Use the labels lsquohighrsquo or lsquolowrsquo functioning as they can mask the need for support People who are described as lsquohigh functioningrsquo can become suicidal
Confuse autism with learning disability - 75 of autistic people do not have a learning disability
Be paternalistic- talk to people as equals
Limit people for example by talking about the kind of jobs autistic people would do (they can do all sorts of jobs)
Say lsquochallenging behaviourrsquo or lsquobehaviour that challengesrsquo- could talk about lsquopotentially violent behaviourrsquo
Do not talk about lsquohow to talk to autistic peoplersquo as this implies a huge difference
Do not talk about treatment ndash it is the National Health Service not the National Treatment Service
Do not assume if someone does not talk that they do not understand or that they cannot be involved
There was discussion around the need for better language on lsquochallenging behaviourrsquo
Some autistic people preferred the term lsquoa risk to self or othersrsquo but others preferred
lsquopotentially violent behaviourrsquo In the absence of a clear preference the group
concluded that the term lsquobehaviour that challenges servicesrsquo was to be used in the
interim
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 11
334 Getting the Language Right about Autism
Based on the work of the NHS England Learning Disability and Autism Advisory Group
NHS England have published five top tips and a table offering best practice on the
language to use when talking about autism19
1 Talk about autism positively Many autistic people see autism as part of who
they are rather than something separate and prefer to be described as
lsquoautisticrsquo or lsquoon the autism spectrumrsquo ndash rather than as lsquosomeone with autismrsquo
2 Do not use negative language like lsquosuffering from autismrsquo lsquosymptomsrsquo and
lsquotreatrsquo Instead talk about characteristics support and reasonable
adjustments
3 Every autistic person is different Try to make sure people know this in all
communications
4 Autism is not a learning disability or a mental illness However some autistic
people also have a learning disability and many people have a mental health
problem
5 Some people on the autism spectrum understand language very literally
Avoid phrases that do not say what they mean Like ldquoitrsquos raining cats and
dogsrdquo Use clear everyday language
19 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 5
use or otherwise of PoC in neighbouring jurisdictions (to assign resources or manage
services) RaISe then posed a number of questions via email to NHS England NHS
Scotland NHS Wales and also to the HSE in the Republic of Ireland as follows and
referring to the PoC in NI
Is there a similar system in use within NHS EnglandScotlandWales or in the
HSE
If not what is the system used to assign finance to areas of healthcare
If there are such PoC in use ndash in which one does Autism Services sit or belong
The responses from the DoH can be found in follow-up RaISe update briefing NIAR-
208-2020
3 Autism and Use of Language
31 Introduction
Autism is a lifelong developmental disability that affects how people perceive the world
and interact with others Autistic people see hear and feel the world differently to other
people Autism is a spectrum condition and often people feel being autistic is a
fundamental aspect of their identity All autistic people share certain difficulties but
being autistic will affect them in different ways11
The NHS states that autism is not an illness or disease but means a personrsquos brain
works in a different way from other people Some people with autism will also
have learning disabilities mental health issues (such as anxiety or depression)
or other conditions such as attention deficit hyperactivity disorder (ADHD) dyslexia
and epilepsy meaning people need different levels of support12
Qualitative differences in social interaction are arguably the core defining features of
the autism spectrum Such differences can result in social isolation and exclusion and
can potentially pervade all aspects of ordinary living such as relationships employment
and access to leisure and consumer experiences13
Some people with autism are able to live relatively independent lives but others may
face more challenges Areas of life that can be challenging include - socialising and
social interactions interpreting both spoken language and body language differences
in social imagination and difficulty in understanding abstract concepts which can make
11 What is Autism National Autistic Society httpswwwautismorgukaboutwhat-isasdaspx 12 What is Autism NHS httpswwwnhsukconditionsautismwhat-is-autism 13 What is Aspergerrsquos Syndrome Scottish Autism httpswwwscottishautismorgabout-autismabout-autismwhat-aspergers-
syndrome
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 6
it harder for people with autism to cope with new unfamiliar or unexpected situations
and lsquounderrsquo or lsquooverrsquo sensitivity in any of the senses (sight hearing and balance)14
32 Language used in Diagnosis of Autism
321 Profiles
The following information is directly extracted from the website of the National Autistic
Society15
All autistic people share certain difficulties but being autistic will affect them in different
ways These differences along with differences in diagnostic approach have resulted
in a variety of termslanguage being used to diagnose autistic people including autism
autism spectrum disorder (ASD) autism spectrum condition (ASC) atypical autism
classic autism Kanner autism pervasive developmental disorder (PDD) high-
functioning autism (HFA) Asperger syndrome and pathological demand
avoidance (PDA)
Because of recent changes to the main diagnostic manuals autism spectrum disorder
(ASD) is now likely to become the most commonly given diagnostic term However
clinicians will still often use additional terms to help to describe the particular autism
profile presented by an individual
Asperger syndrome profile
A clinician might describe someone as having an Asperger syndrome profile if there
has been no clinically significant delay in language or cognitive development but they
still have social communication difficulties They may also have specific delays in motor
development as well as motor clumsiness
Demand-avoidant profile
A clinician might describe a person as having a demand-avoidant profile or
pathological demand avoidance (PDA) if they are driven to excessively avoid demands
and expectations Underpinning this avoidance is an extremely high level of anxiety
about conforming to social demands and of not being in control of the situation
Misdiagnosis
Clinicians lacking autism experience may miss the fact that autism is underlying the
obvious difficulties seen on the surface and make clinical observations that do not take
the issues related to autism into account For example they may observe issues such
as a persons clumsiness (possible dyspraxia) reading difficulty (possible dyslexia)
14 What is autism Ambitious about Autism httpswwwambitiousaboutautismorgukinformation-about-autismunderstanding-autismwhat-is-autism
15 Autism profiles and diagnostic criteria National Autistic Society httpswwwautismorgukaboutdiagnosiscriteria-changesaspx
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 7
poor attention span (possible Attention Deficit Disorder) difficulty with social
communication (semantic pragmatic disorder or social communication disorder)
mental health issues or behavioural issues and diagnose that as the main condition
instead
322 International Classification of Diseases (ICD-11)
The ICD-11 is the most recent version of the most commonly used diagnostic manual
in the UK The information in this section is summarised from the website of Research
Autism16
In ICD-11 Autism Spectrum Disorder is characterised by persistent deficits in the
ability to initiate and to sustain reciprocal social interaction and social communication
and by a range of restricted repetitive and inflexible patterns of behaviour and
interests
The onset of the disorder occurs during the developmental period typically in early
childhood but symptoms may not fully manifest until later when social demands
exceed limited capacities
The deficits are sufficiently severe to cause impairment in personal family social
educational occupational or other important areas of functioning and are usually a
pervasive feature of the individualrsquos functioning observable in all settings although they
may vary according to social educational or other context Individuals along the
spectrum exhibit a full range of intellectual functioning and language abilities
ICD-11 also lists several sub-types of Autism Spectrum Disorder
6A020 - Autism spectrum disorder without disorder of intellectual development and
with mild or no impairment of functional language All definitional requirements for
autism spectrum disorder are met intellectual functioning and adaptive behaviour are
found to be at least within the average range (approximately greater than the 23rd
percentile) and there is only mild or no impairment in the individuals capacity to use
functional language (spoken or signed) for instrumental purposes such as to express
personal needs and desires
6A021 - Autism spectrum disorder with disorder of intellectual development and with
mild or no impairment of functional language All definitional requirements for both
autism spectrum disorder and disorder of intellectual development are met and there is
only mild or no impairment in the individuals capacity to use functional language
(spoken or signed) for instrumental purposes such as to express personal needs and
desires
16 Autism (Autism Spectrum Disorder) Diagnostic Criteria ICD-11 Research Autism
httpwwwresearchautismnetconditions7autism-(autism-spectrum-disorder)Diagnosis
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 8
6A022 - Autism spectrum disorder without disorder of intellectual development and
with impaired functional language All definitional requirements for autism spectrum
disorder are met Intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is marked impairment in functional language (spoken or signed) relative to the
individualrsquos age with the individual not able to use more than single words or simple
phrases for instrumental purposes such as to express personal needs and desires
6A023 - Autism spectrum disorder with disorder of intellectual development and with
impaired functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is marked
impairment in functional language (spoken or signed) relative to the individualrsquos age
with the individual not able to use more than single words or simple phrases for
instrumental purposes such as to express personal needs and desires
6A024 - Autism spectrum disorder without disorder of intellectual development and
with absence of functional language All definitional requirements for autism spectrum
disorder are met intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is complete or almost complete absence of ability relative to the individualrsquos age
to use functional language (spoken or signed) for instrumental purposes such as to
express personal needs and desires
6A025 - Autism spectrum disorder with disorder of intellectual development and with
absence of functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is complete or
almost complete absence of ability relative to the individualrsquos age to use functional
language (spoken or signed) for instrumental purposes such as to express personal
needs and desires
33 Language used to Describe Autism
331 Key Research Study
The complex nature of the autism spectrum gives rise to a range of personal and
professional perspectives It can therefore be a challenge to find a common language
that reflects the values and principles of the various groups who are invested in
advancing the understanding and support of people of all ages
A key study published in 2016 sought to elicit the views and preferences of the UK
autism community ndash autistic people parents and their broader support network ndash about
the terms they preferred to use to describe autism The findings demonstrated that
there is no single way of describing autism that was universally accepted and preferred
by the UKrsquos autism community and that some disagreements appeared deeply
entrenched The study found that the term lsquoautisticrsquo is preferred by adult individuals
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 9
(and their families) whilst professionals tend to prefer terms such as lsquoindividual with
autismrsquo17
In all 3470 UK residents responded to the online survey The results showed that the
most highly endorsed terms were lsquoautismrsquo and lsquoon the autism spectrumrsquo and to a lesser
extent lsquoautism spectrum disorderrsquo for which there was consensus across community
groups The groups disagreed however on the use of several terms The term
lsquoautisticrsquo was endorsed by a large percentage of autistic adults family membersfriends
and parents who responded to the survey but by considerably fewer professionals
lsquoPerson with autismrsquo was endorsed by almost half of professionals but by fewer autistic
adults and parents
332 NHS England Learning Disability and Autism Advisory Group (2017)
In 2017 the NHS England Learning Disability and Autism Advisory Group published
the results of focus group work with autistic people The advisory group helps NHS
England with work that affects people with a learning disability autism or both and their
families The group is made up of 15 experts by experience which includes people
with a learning disability autism or both and their families Its members are used to
speaking out and have good connections with local and national learning disability and
autism groups
Part of the discussions were around the lsquoDos Donrsquots and Maybesrsquo of good language
about autism using the research referred to in Section 32 above as a starting point
The results included18
When talking with people DO
Talk about autistic people rather than people with autism
Talk to people as humans - as you would talk to someone in your family
Use clear precise concise everyday language
Consider alternative communication
NHS communications need to be clear and concise for everyone and
Think of us as individuals not as labels
In news or campaigns DO
Use social model of disability in language
If you run a campaign launch it positively and actively - communicate about positives of autism not just negatives
17 Kenny L et al (2016) Which terms should be used to describe autism Perspectives from the UK autism community
Autism 20(4)442-62 httpspubmedncbinlmnihgov26134030
18 Autism focus 2 lsquoYou Said We Didrsquo NHS England Learning Disability and Autism Advisory Group Learning Disability and
Autism Engagement Team December 2017 httpswwwenglandnhsukwp-contentuploads201803focus-on-autism-2-plain-
englishpdf
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 10
Talk about difference not different
Promote communication by and from autistic people and their parents and
Talk about how to talk to people in a way that includes autistic people
DO NOT
Use the medical model of disability
Use the labels lsquohighrsquo or lsquolowrsquo functioning as they can mask the need for support People who are described as lsquohigh functioningrsquo can become suicidal
Confuse autism with learning disability - 75 of autistic people do not have a learning disability
Be paternalistic- talk to people as equals
Limit people for example by talking about the kind of jobs autistic people would do (they can do all sorts of jobs)
Say lsquochallenging behaviourrsquo or lsquobehaviour that challengesrsquo- could talk about lsquopotentially violent behaviourrsquo
Do not talk about lsquohow to talk to autistic peoplersquo as this implies a huge difference
Do not talk about treatment ndash it is the National Health Service not the National Treatment Service
Do not assume if someone does not talk that they do not understand or that they cannot be involved
There was discussion around the need for better language on lsquochallenging behaviourrsquo
Some autistic people preferred the term lsquoa risk to self or othersrsquo but others preferred
lsquopotentially violent behaviourrsquo In the absence of a clear preference the group
concluded that the term lsquobehaviour that challenges servicesrsquo was to be used in the
interim
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 11
334 Getting the Language Right about Autism
Based on the work of the NHS England Learning Disability and Autism Advisory Group
NHS England have published five top tips and a table offering best practice on the
language to use when talking about autism19
1 Talk about autism positively Many autistic people see autism as part of who
they are rather than something separate and prefer to be described as
lsquoautisticrsquo or lsquoon the autism spectrumrsquo ndash rather than as lsquosomeone with autismrsquo
2 Do not use negative language like lsquosuffering from autismrsquo lsquosymptomsrsquo and
lsquotreatrsquo Instead talk about characteristics support and reasonable
adjustments
3 Every autistic person is different Try to make sure people know this in all
communications
4 Autism is not a learning disability or a mental illness However some autistic
people also have a learning disability and many people have a mental health
problem
5 Some people on the autism spectrum understand language very literally
Avoid phrases that do not say what they mean Like ldquoitrsquos raining cats and
dogsrdquo Use clear everyday language
19 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 6
it harder for people with autism to cope with new unfamiliar or unexpected situations
and lsquounderrsquo or lsquooverrsquo sensitivity in any of the senses (sight hearing and balance)14
32 Language used in Diagnosis of Autism
321 Profiles
The following information is directly extracted from the website of the National Autistic
Society15
All autistic people share certain difficulties but being autistic will affect them in different
ways These differences along with differences in diagnostic approach have resulted
in a variety of termslanguage being used to diagnose autistic people including autism
autism spectrum disorder (ASD) autism spectrum condition (ASC) atypical autism
classic autism Kanner autism pervasive developmental disorder (PDD) high-
functioning autism (HFA) Asperger syndrome and pathological demand
avoidance (PDA)
Because of recent changes to the main diagnostic manuals autism spectrum disorder
(ASD) is now likely to become the most commonly given diagnostic term However
clinicians will still often use additional terms to help to describe the particular autism
profile presented by an individual
Asperger syndrome profile
A clinician might describe someone as having an Asperger syndrome profile if there
has been no clinically significant delay in language or cognitive development but they
still have social communication difficulties They may also have specific delays in motor
development as well as motor clumsiness
Demand-avoidant profile
A clinician might describe a person as having a demand-avoidant profile or
pathological demand avoidance (PDA) if they are driven to excessively avoid demands
and expectations Underpinning this avoidance is an extremely high level of anxiety
about conforming to social demands and of not being in control of the situation
Misdiagnosis
Clinicians lacking autism experience may miss the fact that autism is underlying the
obvious difficulties seen on the surface and make clinical observations that do not take
the issues related to autism into account For example they may observe issues such
as a persons clumsiness (possible dyspraxia) reading difficulty (possible dyslexia)
14 What is autism Ambitious about Autism httpswwwambitiousaboutautismorgukinformation-about-autismunderstanding-autismwhat-is-autism
15 Autism profiles and diagnostic criteria National Autistic Society httpswwwautismorgukaboutdiagnosiscriteria-changesaspx
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 7
poor attention span (possible Attention Deficit Disorder) difficulty with social
communication (semantic pragmatic disorder or social communication disorder)
mental health issues or behavioural issues and diagnose that as the main condition
instead
322 International Classification of Diseases (ICD-11)
The ICD-11 is the most recent version of the most commonly used diagnostic manual
in the UK The information in this section is summarised from the website of Research
Autism16
In ICD-11 Autism Spectrum Disorder is characterised by persistent deficits in the
ability to initiate and to sustain reciprocal social interaction and social communication
and by a range of restricted repetitive and inflexible patterns of behaviour and
interests
The onset of the disorder occurs during the developmental period typically in early
childhood but symptoms may not fully manifest until later when social demands
exceed limited capacities
The deficits are sufficiently severe to cause impairment in personal family social
educational occupational or other important areas of functioning and are usually a
pervasive feature of the individualrsquos functioning observable in all settings although they
may vary according to social educational or other context Individuals along the
spectrum exhibit a full range of intellectual functioning and language abilities
ICD-11 also lists several sub-types of Autism Spectrum Disorder
6A020 - Autism spectrum disorder without disorder of intellectual development and
with mild or no impairment of functional language All definitional requirements for
autism spectrum disorder are met intellectual functioning and adaptive behaviour are
found to be at least within the average range (approximately greater than the 23rd
percentile) and there is only mild or no impairment in the individuals capacity to use
functional language (spoken or signed) for instrumental purposes such as to express
personal needs and desires
6A021 - Autism spectrum disorder with disorder of intellectual development and with
mild or no impairment of functional language All definitional requirements for both
autism spectrum disorder and disorder of intellectual development are met and there is
only mild or no impairment in the individuals capacity to use functional language
(spoken or signed) for instrumental purposes such as to express personal needs and
desires
16 Autism (Autism Spectrum Disorder) Diagnostic Criteria ICD-11 Research Autism
httpwwwresearchautismnetconditions7autism-(autism-spectrum-disorder)Diagnosis
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 8
6A022 - Autism spectrum disorder without disorder of intellectual development and
with impaired functional language All definitional requirements for autism spectrum
disorder are met Intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is marked impairment in functional language (spoken or signed) relative to the
individualrsquos age with the individual not able to use more than single words or simple
phrases for instrumental purposes such as to express personal needs and desires
6A023 - Autism spectrum disorder with disorder of intellectual development and with
impaired functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is marked
impairment in functional language (spoken or signed) relative to the individualrsquos age
with the individual not able to use more than single words or simple phrases for
instrumental purposes such as to express personal needs and desires
6A024 - Autism spectrum disorder without disorder of intellectual development and
with absence of functional language All definitional requirements for autism spectrum
disorder are met intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is complete or almost complete absence of ability relative to the individualrsquos age
to use functional language (spoken or signed) for instrumental purposes such as to
express personal needs and desires
6A025 - Autism spectrum disorder with disorder of intellectual development and with
absence of functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is complete or
almost complete absence of ability relative to the individualrsquos age to use functional
language (spoken or signed) for instrumental purposes such as to express personal
needs and desires
33 Language used to Describe Autism
331 Key Research Study
The complex nature of the autism spectrum gives rise to a range of personal and
professional perspectives It can therefore be a challenge to find a common language
that reflects the values and principles of the various groups who are invested in
advancing the understanding and support of people of all ages
A key study published in 2016 sought to elicit the views and preferences of the UK
autism community ndash autistic people parents and their broader support network ndash about
the terms they preferred to use to describe autism The findings demonstrated that
there is no single way of describing autism that was universally accepted and preferred
by the UKrsquos autism community and that some disagreements appeared deeply
entrenched The study found that the term lsquoautisticrsquo is preferred by adult individuals
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 9
(and their families) whilst professionals tend to prefer terms such as lsquoindividual with
autismrsquo17
In all 3470 UK residents responded to the online survey The results showed that the
most highly endorsed terms were lsquoautismrsquo and lsquoon the autism spectrumrsquo and to a lesser
extent lsquoautism spectrum disorderrsquo for which there was consensus across community
groups The groups disagreed however on the use of several terms The term
lsquoautisticrsquo was endorsed by a large percentage of autistic adults family membersfriends
and parents who responded to the survey but by considerably fewer professionals
lsquoPerson with autismrsquo was endorsed by almost half of professionals but by fewer autistic
adults and parents
332 NHS England Learning Disability and Autism Advisory Group (2017)
In 2017 the NHS England Learning Disability and Autism Advisory Group published
the results of focus group work with autistic people The advisory group helps NHS
England with work that affects people with a learning disability autism or both and their
families The group is made up of 15 experts by experience which includes people
with a learning disability autism or both and their families Its members are used to
speaking out and have good connections with local and national learning disability and
autism groups
Part of the discussions were around the lsquoDos Donrsquots and Maybesrsquo of good language
about autism using the research referred to in Section 32 above as a starting point
The results included18
When talking with people DO
Talk about autistic people rather than people with autism
Talk to people as humans - as you would talk to someone in your family
Use clear precise concise everyday language
Consider alternative communication
NHS communications need to be clear and concise for everyone and
Think of us as individuals not as labels
In news or campaigns DO
Use social model of disability in language
If you run a campaign launch it positively and actively - communicate about positives of autism not just negatives
17 Kenny L et al (2016) Which terms should be used to describe autism Perspectives from the UK autism community
Autism 20(4)442-62 httpspubmedncbinlmnihgov26134030
18 Autism focus 2 lsquoYou Said We Didrsquo NHS England Learning Disability and Autism Advisory Group Learning Disability and
Autism Engagement Team December 2017 httpswwwenglandnhsukwp-contentuploads201803focus-on-autism-2-plain-
englishpdf
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 10
Talk about difference not different
Promote communication by and from autistic people and their parents and
Talk about how to talk to people in a way that includes autistic people
DO NOT
Use the medical model of disability
Use the labels lsquohighrsquo or lsquolowrsquo functioning as they can mask the need for support People who are described as lsquohigh functioningrsquo can become suicidal
Confuse autism with learning disability - 75 of autistic people do not have a learning disability
Be paternalistic- talk to people as equals
Limit people for example by talking about the kind of jobs autistic people would do (they can do all sorts of jobs)
Say lsquochallenging behaviourrsquo or lsquobehaviour that challengesrsquo- could talk about lsquopotentially violent behaviourrsquo
Do not talk about lsquohow to talk to autistic peoplersquo as this implies a huge difference
Do not talk about treatment ndash it is the National Health Service not the National Treatment Service
Do not assume if someone does not talk that they do not understand or that they cannot be involved
There was discussion around the need for better language on lsquochallenging behaviourrsquo
Some autistic people preferred the term lsquoa risk to self or othersrsquo but others preferred
lsquopotentially violent behaviourrsquo In the absence of a clear preference the group
concluded that the term lsquobehaviour that challenges servicesrsquo was to be used in the
interim
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 11
334 Getting the Language Right about Autism
Based on the work of the NHS England Learning Disability and Autism Advisory Group
NHS England have published five top tips and a table offering best practice on the
language to use when talking about autism19
1 Talk about autism positively Many autistic people see autism as part of who
they are rather than something separate and prefer to be described as
lsquoautisticrsquo or lsquoon the autism spectrumrsquo ndash rather than as lsquosomeone with autismrsquo
2 Do not use negative language like lsquosuffering from autismrsquo lsquosymptomsrsquo and
lsquotreatrsquo Instead talk about characteristics support and reasonable
adjustments
3 Every autistic person is different Try to make sure people know this in all
communications
4 Autism is not a learning disability or a mental illness However some autistic
people also have a learning disability and many people have a mental health
problem
5 Some people on the autism spectrum understand language very literally
Avoid phrases that do not say what they mean Like ldquoitrsquos raining cats and
dogsrdquo Use clear everyday language
19 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 7
poor attention span (possible Attention Deficit Disorder) difficulty with social
communication (semantic pragmatic disorder or social communication disorder)
mental health issues or behavioural issues and diagnose that as the main condition
instead
322 International Classification of Diseases (ICD-11)
The ICD-11 is the most recent version of the most commonly used diagnostic manual
in the UK The information in this section is summarised from the website of Research
Autism16
In ICD-11 Autism Spectrum Disorder is characterised by persistent deficits in the
ability to initiate and to sustain reciprocal social interaction and social communication
and by a range of restricted repetitive and inflexible patterns of behaviour and
interests
The onset of the disorder occurs during the developmental period typically in early
childhood but symptoms may not fully manifest until later when social demands
exceed limited capacities
The deficits are sufficiently severe to cause impairment in personal family social
educational occupational or other important areas of functioning and are usually a
pervasive feature of the individualrsquos functioning observable in all settings although they
may vary according to social educational or other context Individuals along the
spectrum exhibit a full range of intellectual functioning and language abilities
ICD-11 also lists several sub-types of Autism Spectrum Disorder
6A020 - Autism spectrum disorder without disorder of intellectual development and
with mild or no impairment of functional language All definitional requirements for
autism spectrum disorder are met intellectual functioning and adaptive behaviour are
found to be at least within the average range (approximately greater than the 23rd
percentile) and there is only mild or no impairment in the individuals capacity to use
functional language (spoken or signed) for instrumental purposes such as to express
personal needs and desires
6A021 - Autism spectrum disorder with disorder of intellectual development and with
mild or no impairment of functional language All definitional requirements for both
autism spectrum disorder and disorder of intellectual development are met and there is
only mild or no impairment in the individuals capacity to use functional language
(spoken or signed) for instrumental purposes such as to express personal needs and
desires
16 Autism (Autism Spectrum Disorder) Diagnostic Criteria ICD-11 Research Autism
httpwwwresearchautismnetconditions7autism-(autism-spectrum-disorder)Diagnosis
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 8
6A022 - Autism spectrum disorder without disorder of intellectual development and
with impaired functional language All definitional requirements for autism spectrum
disorder are met Intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is marked impairment in functional language (spoken or signed) relative to the
individualrsquos age with the individual not able to use more than single words or simple
phrases for instrumental purposes such as to express personal needs and desires
6A023 - Autism spectrum disorder with disorder of intellectual development and with
impaired functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is marked
impairment in functional language (spoken or signed) relative to the individualrsquos age
with the individual not able to use more than single words or simple phrases for
instrumental purposes such as to express personal needs and desires
6A024 - Autism spectrum disorder without disorder of intellectual development and
with absence of functional language All definitional requirements for autism spectrum
disorder are met intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is complete or almost complete absence of ability relative to the individualrsquos age
to use functional language (spoken or signed) for instrumental purposes such as to
express personal needs and desires
6A025 - Autism spectrum disorder with disorder of intellectual development and with
absence of functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is complete or
almost complete absence of ability relative to the individualrsquos age to use functional
language (spoken or signed) for instrumental purposes such as to express personal
needs and desires
33 Language used to Describe Autism
331 Key Research Study
The complex nature of the autism spectrum gives rise to a range of personal and
professional perspectives It can therefore be a challenge to find a common language
that reflects the values and principles of the various groups who are invested in
advancing the understanding and support of people of all ages
A key study published in 2016 sought to elicit the views and preferences of the UK
autism community ndash autistic people parents and their broader support network ndash about
the terms they preferred to use to describe autism The findings demonstrated that
there is no single way of describing autism that was universally accepted and preferred
by the UKrsquos autism community and that some disagreements appeared deeply
entrenched The study found that the term lsquoautisticrsquo is preferred by adult individuals
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 9
(and their families) whilst professionals tend to prefer terms such as lsquoindividual with
autismrsquo17
In all 3470 UK residents responded to the online survey The results showed that the
most highly endorsed terms were lsquoautismrsquo and lsquoon the autism spectrumrsquo and to a lesser
extent lsquoautism spectrum disorderrsquo for which there was consensus across community
groups The groups disagreed however on the use of several terms The term
lsquoautisticrsquo was endorsed by a large percentage of autistic adults family membersfriends
and parents who responded to the survey but by considerably fewer professionals
lsquoPerson with autismrsquo was endorsed by almost half of professionals but by fewer autistic
adults and parents
332 NHS England Learning Disability and Autism Advisory Group (2017)
In 2017 the NHS England Learning Disability and Autism Advisory Group published
the results of focus group work with autistic people The advisory group helps NHS
England with work that affects people with a learning disability autism or both and their
families The group is made up of 15 experts by experience which includes people
with a learning disability autism or both and their families Its members are used to
speaking out and have good connections with local and national learning disability and
autism groups
Part of the discussions were around the lsquoDos Donrsquots and Maybesrsquo of good language
about autism using the research referred to in Section 32 above as a starting point
The results included18
When talking with people DO
Talk about autistic people rather than people with autism
Talk to people as humans - as you would talk to someone in your family
Use clear precise concise everyday language
Consider alternative communication
NHS communications need to be clear and concise for everyone and
Think of us as individuals not as labels
In news or campaigns DO
Use social model of disability in language
If you run a campaign launch it positively and actively - communicate about positives of autism not just negatives
17 Kenny L et al (2016) Which terms should be used to describe autism Perspectives from the UK autism community
Autism 20(4)442-62 httpspubmedncbinlmnihgov26134030
18 Autism focus 2 lsquoYou Said We Didrsquo NHS England Learning Disability and Autism Advisory Group Learning Disability and
Autism Engagement Team December 2017 httpswwwenglandnhsukwp-contentuploads201803focus-on-autism-2-plain-
englishpdf
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 10
Talk about difference not different
Promote communication by and from autistic people and their parents and
Talk about how to talk to people in a way that includes autistic people
DO NOT
Use the medical model of disability
Use the labels lsquohighrsquo or lsquolowrsquo functioning as they can mask the need for support People who are described as lsquohigh functioningrsquo can become suicidal
Confuse autism with learning disability - 75 of autistic people do not have a learning disability
Be paternalistic- talk to people as equals
Limit people for example by talking about the kind of jobs autistic people would do (they can do all sorts of jobs)
Say lsquochallenging behaviourrsquo or lsquobehaviour that challengesrsquo- could talk about lsquopotentially violent behaviourrsquo
Do not talk about lsquohow to talk to autistic peoplersquo as this implies a huge difference
Do not talk about treatment ndash it is the National Health Service not the National Treatment Service
Do not assume if someone does not talk that they do not understand or that they cannot be involved
There was discussion around the need for better language on lsquochallenging behaviourrsquo
Some autistic people preferred the term lsquoa risk to self or othersrsquo but others preferred
lsquopotentially violent behaviourrsquo In the absence of a clear preference the group
concluded that the term lsquobehaviour that challenges servicesrsquo was to be used in the
interim
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 11
334 Getting the Language Right about Autism
Based on the work of the NHS England Learning Disability and Autism Advisory Group
NHS England have published five top tips and a table offering best practice on the
language to use when talking about autism19
1 Talk about autism positively Many autistic people see autism as part of who
they are rather than something separate and prefer to be described as
lsquoautisticrsquo or lsquoon the autism spectrumrsquo ndash rather than as lsquosomeone with autismrsquo
2 Do not use negative language like lsquosuffering from autismrsquo lsquosymptomsrsquo and
lsquotreatrsquo Instead talk about characteristics support and reasonable
adjustments
3 Every autistic person is different Try to make sure people know this in all
communications
4 Autism is not a learning disability or a mental illness However some autistic
people also have a learning disability and many people have a mental health
problem
5 Some people on the autism spectrum understand language very literally
Avoid phrases that do not say what they mean Like ldquoitrsquos raining cats and
dogsrdquo Use clear everyday language
19 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 8
6A022 - Autism spectrum disorder without disorder of intellectual development and
with impaired functional language All definitional requirements for autism spectrum
disorder are met Intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is marked impairment in functional language (spoken or signed) relative to the
individualrsquos age with the individual not able to use more than single words or simple
phrases for instrumental purposes such as to express personal needs and desires
6A023 - Autism spectrum disorder with disorder of intellectual development and with
impaired functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is marked
impairment in functional language (spoken or signed) relative to the individualrsquos age
with the individual not able to use more than single words or simple phrases for
instrumental purposes such as to express personal needs and desires
6A024 - Autism spectrum disorder without disorder of intellectual development and
with absence of functional language All definitional requirements for autism spectrum
disorder are met intellectual functioning and adaptive behaviour are found to be at
least within the average range (approximately greater than the 23rd percentile) and
there is complete or almost complete absence of ability relative to the individualrsquos age
to use functional language (spoken or signed) for instrumental purposes such as to
express personal needs and desires
6A025 - Autism spectrum disorder with disorder of intellectual development and with
absence of functional language All definitional requirements for both autism spectrum
disorder and disorder of intellectual development are met and there is complete or
almost complete absence of ability relative to the individualrsquos age to use functional
language (spoken or signed) for instrumental purposes such as to express personal
needs and desires
33 Language used to Describe Autism
331 Key Research Study
The complex nature of the autism spectrum gives rise to a range of personal and
professional perspectives It can therefore be a challenge to find a common language
that reflects the values and principles of the various groups who are invested in
advancing the understanding and support of people of all ages
A key study published in 2016 sought to elicit the views and preferences of the UK
autism community ndash autistic people parents and their broader support network ndash about
the terms they preferred to use to describe autism The findings demonstrated that
there is no single way of describing autism that was universally accepted and preferred
by the UKrsquos autism community and that some disagreements appeared deeply
entrenched The study found that the term lsquoautisticrsquo is preferred by adult individuals
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 9
(and their families) whilst professionals tend to prefer terms such as lsquoindividual with
autismrsquo17
In all 3470 UK residents responded to the online survey The results showed that the
most highly endorsed terms were lsquoautismrsquo and lsquoon the autism spectrumrsquo and to a lesser
extent lsquoautism spectrum disorderrsquo for which there was consensus across community
groups The groups disagreed however on the use of several terms The term
lsquoautisticrsquo was endorsed by a large percentage of autistic adults family membersfriends
and parents who responded to the survey but by considerably fewer professionals
lsquoPerson with autismrsquo was endorsed by almost half of professionals but by fewer autistic
adults and parents
332 NHS England Learning Disability and Autism Advisory Group (2017)
In 2017 the NHS England Learning Disability and Autism Advisory Group published
the results of focus group work with autistic people The advisory group helps NHS
England with work that affects people with a learning disability autism or both and their
families The group is made up of 15 experts by experience which includes people
with a learning disability autism or both and their families Its members are used to
speaking out and have good connections with local and national learning disability and
autism groups
Part of the discussions were around the lsquoDos Donrsquots and Maybesrsquo of good language
about autism using the research referred to in Section 32 above as a starting point
The results included18
When talking with people DO
Talk about autistic people rather than people with autism
Talk to people as humans - as you would talk to someone in your family
Use clear precise concise everyday language
Consider alternative communication
NHS communications need to be clear and concise for everyone and
Think of us as individuals not as labels
In news or campaigns DO
Use social model of disability in language
If you run a campaign launch it positively and actively - communicate about positives of autism not just negatives
17 Kenny L et al (2016) Which terms should be used to describe autism Perspectives from the UK autism community
Autism 20(4)442-62 httpspubmedncbinlmnihgov26134030
18 Autism focus 2 lsquoYou Said We Didrsquo NHS England Learning Disability and Autism Advisory Group Learning Disability and
Autism Engagement Team December 2017 httpswwwenglandnhsukwp-contentuploads201803focus-on-autism-2-plain-
englishpdf
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 10
Talk about difference not different
Promote communication by and from autistic people and their parents and
Talk about how to talk to people in a way that includes autistic people
DO NOT
Use the medical model of disability
Use the labels lsquohighrsquo or lsquolowrsquo functioning as they can mask the need for support People who are described as lsquohigh functioningrsquo can become suicidal
Confuse autism with learning disability - 75 of autistic people do not have a learning disability
Be paternalistic- talk to people as equals
Limit people for example by talking about the kind of jobs autistic people would do (they can do all sorts of jobs)
Say lsquochallenging behaviourrsquo or lsquobehaviour that challengesrsquo- could talk about lsquopotentially violent behaviourrsquo
Do not talk about lsquohow to talk to autistic peoplersquo as this implies a huge difference
Do not talk about treatment ndash it is the National Health Service not the National Treatment Service
Do not assume if someone does not talk that they do not understand or that they cannot be involved
There was discussion around the need for better language on lsquochallenging behaviourrsquo
Some autistic people preferred the term lsquoa risk to self or othersrsquo but others preferred
lsquopotentially violent behaviourrsquo In the absence of a clear preference the group
concluded that the term lsquobehaviour that challenges servicesrsquo was to be used in the
interim
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 11
334 Getting the Language Right about Autism
Based on the work of the NHS England Learning Disability and Autism Advisory Group
NHS England have published five top tips and a table offering best practice on the
language to use when talking about autism19
1 Talk about autism positively Many autistic people see autism as part of who
they are rather than something separate and prefer to be described as
lsquoautisticrsquo or lsquoon the autism spectrumrsquo ndash rather than as lsquosomeone with autismrsquo
2 Do not use negative language like lsquosuffering from autismrsquo lsquosymptomsrsquo and
lsquotreatrsquo Instead talk about characteristics support and reasonable
adjustments
3 Every autistic person is different Try to make sure people know this in all
communications
4 Autism is not a learning disability or a mental illness However some autistic
people also have a learning disability and many people have a mental health
problem
5 Some people on the autism spectrum understand language very literally
Avoid phrases that do not say what they mean Like ldquoitrsquos raining cats and
dogsrdquo Use clear everyday language
19 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 9
(and their families) whilst professionals tend to prefer terms such as lsquoindividual with
autismrsquo17
In all 3470 UK residents responded to the online survey The results showed that the
most highly endorsed terms were lsquoautismrsquo and lsquoon the autism spectrumrsquo and to a lesser
extent lsquoautism spectrum disorderrsquo for which there was consensus across community
groups The groups disagreed however on the use of several terms The term
lsquoautisticrsquo was endorsed by a large percentage of autistic adults family membersfriends
and parents who responded to the survey but by considerably fewer professionals
lsquoPerson with autismrsquo was endorsed by almost half of professionals but by fewer autistic
adults and parents
332 NHS England Learning Disability and Autism Advisory Group (2017)
In 2017 the NHS England Learning Disability and Autism Advisory Group published
the results of focus group work with autistic people The advisory group helps NHS
England with work that affects people with a learning disability autism or both and their
families The group is made up of 15 experts by experience which includes people
with a learning disability autism or both and their families Its members are used to
speaking out and have good connections with local and national learning disability and
autism groups
Part of the discussions were around the lsquoDos Donrsquots and Maybesrsquo of good language
about autism using the research referred to in Section 32 above as a starting point
The results included18
When talking with people DO
Talk about autistic people rather than people with autism
Talk to people as humans - as you would talk to someone in your family
Use clear precise concise everyday language
Consider alternative communication
NHS communications need to be clear and concise for everyone and
Think of us as individuals not as labels
In news or campaigns DO
Use social model of disability in language
If you run a campaign launch it positively and actively - communicate about positives of autism not just negatives
17 Kenny L et al (2016) Which terms should be used to describe autism Perspectives from the UK autism community
Autism 20(4)442-62 httpspubmedncbinlmnihgov26134030
18 Autism focus 2 lsquoYou Said We Didrsquo NHS England Learning Disability and Autism Advisory Group Learning Disability and
Autism Engagement Team December 2017 httpswwwenglandnhsukwp-contentuploads201803focus-on-autism-2-plain-
englishpdf
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 10
Talk about difference not different
Promote communication by and from autistic people and their parents and
Talk about how to talk to people in a way that includes autistic people
DO NOT
Use the medical model of disability
Use the labels lsquohighrsquo or lsquolowrsquo functioning as they can mask the need for support People who are described as lsquohigh functioningrsquo can become suicidal
Confuse autism with learning disability - 75 of autistic people do not have a learning disability
Be paternalistic- talk to people as equals
Limit people for example by talking about the kind of jobs autistic people would do (they can do all sorts of jobs)
Say lsquochallenging behaviourrsquo or lsquobehaviour that challengesrsquo- could talk about lsquopotentially violent behaviourrsquo
Do not talk about lsquohow to talk to autistic peoplersquo as this implies a huge difference
Do not talk about treatment ndash it is the National Health Service not the National Treatment Service
Do not assume if someone does not talk that they do not understand or that they cannot be involved
There was discussion around the need for better language on lsquochallenging behaviourrsquo
Some autistic people preferred the term lsquoa risk to self or othersrsquo but others preferred
lsquopotentially violent behaviourrsquo In the absence of a clear preference the group
concluded that the term lsquobehaviour that challenges servicesrsquo was to be used in the
interim
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 11
334 Getting the Language Right about Autism
Based on the work of the NHS England Learning Disability and Autism Advisory Group
NHS England have published five top tips and a table offering best practice on the
language to use when talking about autism19
1 Talk about autism positively Many autistic people see autism as part of who
they are rather than something separate and prefer to be described as
lsquoautisticrsquo or lsquoon the autism spectrumrsquo ndash rather than as lsquosomeone with autismrsquo
2 Do not use negative language like lsquosuffering from autismrsquo lsquosymptomsrsquo and
lsquotreatrsquo Instead talk about characteristics support and reasonable
adjustments
3 Every autistic person is different Try to make sure people know this in all
communications
4 Autism is not a learning disability or a mental illness However some autistic
people also have a learning disability and many people have a mental health
problem
5 Some people on the autism spectrum understand language very literally
Avoid phrases that do not say what they mean Like ldquoitrsquos raining cats and
dogsrdquo Use clear everyday language
19 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 10
Talk about difference not different
Promote communication by and from autistic people and their parents and
Talk about how to talk to people in a way that includes autistic people
DO NOT
Use the medical model of disability
Use the labels lsquohighrsquo or lsquolowrsquo functioning as they can mask the need for support People who are described as lsquohigh functioningrsquo can become suicidal
Confuse autism with learning disability - 75 of autistic people do not have a learning disability
Be paternalistic- talk to people as equals
Limit people for example by talking about the kind of jobs autistic people would do (they can do all sorts of jobs)
Say lsquochallenging behaviourrsquo or lsquobehaviour that challengesrsquo- could talk about lsquopotentially violent behaviourrsquo
Do not talk about lsquohow to talk to autistic peoplersquo as this implies a huge difference
Do not talk about treatment ndash it is the National Health Service not the National Treatment Service
Do not assume if someone does not talk that they do not understand or that they cannot be involved
There was discussion around the need for better language on lsquochallenging behaviourrsquo
Some autistic people preferred the term lsquoa risk to self or othersrsquo but others preferred
lsquopotentially violent behaviourrsquo In the absence of a clear preference the group
concluded that the term lsquobehaviour that challenges servicesrsquo was to be used in the
interim
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 11
334 Getting the Language Right about Autism
Based on the work of the NHS England Learning Disability and Autism Advisory Group
NHS England have published five top tips and a table offering best practice on the
language to use when talking about autism19
1 Talk about autism positively Many autistic people see autism as part of who
they are rather than something separate and prefer to be described as
lsquoautisticrsquo or lsquoon the autism spectrumrsquo ndash rather than as lsquosomeone with autismrsquo
2 Do not use negative language like lsquosuffering from autismrsquo lsquosymptomsrsquo and
lsquotreatrsquo Instead talk about characteristics support and reasonable
adjustments
3 Every autistic person is different Try to make sure people know this in all
communications
4 Autism is not a learning disability or a mental illness However some autistic
people also have a learning disability and many people have a mental health
problem
5 Some people on the autism spectrum understand language very literally
Avoid phrases that do not say what they mean Like ldquoitrsquos raining cats and
dogsrdquo Use clear everyday language
19 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 11
334 Getting the Language Right about Autism
Based on the work of the NHS England Learning Disability and Autism Advisory Group
NHS England have published five top tips and a table offering best practice on the
language to use when talking about autism19
1 Talk about autism positively Many autistic people see autism as part of who
they are rather than something separate and prefer to be described as
lsquoautisticrsquo or lsquoon the autism spectrumrsquo ndash rather than as lsquosomeone with autismrsquo
2 Do not use negative language like lsquosuffering from autismrsquo lsquosymptomsrsquo and
lsquotreatrsquo Instead talk about characteristics support and reasonable
adjustments
3 Every autistic person is different Try to make sure people know this in all
communications
4 Autism is not a learning disability or a mental illness However some autistic
people also have a learning disability and many people have a mental health
problem
5 Some people on the autism spectrum understand language very literally
Avoid phrases that do not say what they mean Like ldquoitrsquos raining cats and
dogsrdquo Use clear everyday language
19 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 12
Table - Getting the Words Right about Autism
The information in the table below is taken from a table on the website of NHS
England lsquoGetting words right about autismrsquo 20
Words to Use Words to Avoid The Reasons
Autism or
The autism spectrum
ASD Autism Spectrum
Disorder
Autism Spectrum Disorder is the official way of describing
autism but many autistic people and families feel that the
term lsquodisorderrsquo is too negative for everyday discussions
Autism is a difference rather than a disorder
The words autism and autism spectrum are widely accepted
by autistic people and their families
Autistic adultpeople
or
People on the autism
spectrum
Adultperson with autism This is a sensitive issue in the autism community as many
autistic people see autism as a part of who they are ndash rather
than something separate
Research shows that there is not one way accepted by
everyone However autistic and on the autism spectrum
were the preferred terms among most autistic adults and
families
Children on the autism
spectrum
Children with autism There is less agreement about how to describe children
Many autism organisations particularly those focused on
children and young people use the terms lsquowith autismrsquo or lsquoon
the autism spectrumrsquo Research shows that families are
divided on which term they like best
20 Making information and the words we use accessible NHS England httpswwwenglandnhsuklearning-
disabilitiesaboutget-involvedinvolving-peoplemaking-information-and-the-words-we-use-accessibleautism
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things
NIAR 132-2020 Briefing Note
Providing research and information services to the Northern Ireland Assembly 13
Words to Use Words to Avoid The Reasons
Characteristics
or traits
Symptoms Symptoms make it sound as though autism is a disease
It also does not recognise that there are many positive things
associated with autism like working hard to achieve things
and seeing things in a different way which can be great for
problem solving
Support
or
adjustments
Treat Words like lsquotreatrsquo mean that people may think that autism is a
disease that can be removed or cured This upsets many
autistic people and families With support andor reasonable
adjustments many autistic people live independent lives
Behaviour that
challenges
behaviour that
challenges services or
behaviour that
communicates distress
Challenging behaviour This phrase is very unpopular with many autistic people and
families
There is not an accepted alternative However it is
sometimes necessary to talk about this issue and lsquobehaviour
that challenges servicesrsquo is better to use
The term lsquochallenging behaviourrsquo makes people think that the
behaviour itself is the problem when often it is actually a sign
that a personrsquos needs are not being met The term lsquobehaviour
that challengesrsquo is better because it does not make people
think that this behaviour is necessarily meant to
challenge This kind of behaviour is often communicating
distress and is sometimes described as behaviour that
communicates distress
Learning disability
autism or both
Learning disability andor
autism
This makes it clear that learning disability and autism are two
different things